Even though my husband and I have been doing this parenting gig for a while now, it never ceases to amaze me how much I do not know. Since bringing home our youngest last year, we have found challenges that we never would have thought of and beauty and joy in places we never would have imagined. While we did our best to educate ourselves on having a child with Down syndrome, there are plenty of things that have come our way that have opened our eyes and brought us to a new understanding of what love really means.
I’ve decided that being a special needs parent is a bit like parenting on steroids.
Maybe you know a family who has a child with special needs. If you do, this is what I want you to know:
We have WAY more paperwork and medical appointments than people with typical children.
Let’s start with check-ups. Most kids with special needs happen to need more, well, specialists. Every few months she has an appointment with one of them. In addition, kids who have Down syndrome often have lower immune systems. Which means we’re spending more time at the doctor’s office and more days home from school. Every few months we have to go in for a blood draw to keep an eye on her thyroid, CBC and iron levels. I’m holding her down while having two lab people drawing her blood. Mentally and physically it can be exhausting.
Advocacy
We have an amazing school with incredible teachers. I count on those who care for her because I have no idea what she’s up to without her education team. But no matter how awesome they are, it is our job as parents to stay on top of all of the therapies that she needs and to do the paperwork that goes with it. She needs OT, PT and speech which she can get at school (during the school year). Anything outside of school (like additional therapy) needs to be found on our own, which may or may not be covered by our insurance. She has a separate insurance that covers some things but not others, which means more paperwork, more phone calls and emails to get what she needs.
She needs constant supervision.
For now, my daughter needs to be watched constantly. She will walk out our front door and silently shut it behind her if we don’t keep it dead bolted. She might play in the toilet or try to feed the puppy her sock. Or… she’ll sit on the floor with her dolls and play with them happily for forty five minutes. It’s completely random. Bottom line, she’s unpredictable.
And because she needs constant care, date nights are not what they once were. It’s easier for us to go out once she’s in bed and an older brother can be in charge. I can’t just hire any babysitter for a girl like her. So, we tag-team when we can and make the most of our time together at home or as a family. But I’m not going to lie, I am envious of friends who go on weekend getaways with their husbands. I don’t see that happening anytime soon.
Being out in public
When I go to Target I just want to go in with my kids like everyone else. And, oftentimes we do. But sometimes we get extra attention because we are unusual. I do not mind answering questions (especially from kids), and I do know that getting noticed is part of our life. But sometimes, I just want to buzz through the aisles like everyone else.
One thing that I have noticed is that kids are SO much more comfortable with her than adults. It is the adults that I have to reassure because she is mostly non-verbal (she uses some ASL and some spoken words to communicate). The adults want to know why she’s still in diapers, the kids just want to have their reasonable questions answered and then move on. I am told that she is the most popular kid in her kindergarten class. I credit the schools for that because unlike when I was in school, it’s not a big deal to have a kid with special needs in your classroom.
I want to stress here that she is THE BEST thing that has EVER happened to us. Our whole family has doubled the size of our hearts and have learned so much because of her. I wouldn’t trade this life for the world. But what I want you to know is sometimes, I’m just really tired. If you know a family with a child with special needs, they need positive interactions, not judgement. They need a community that supports and accepts them and their child. Every family is unique, and every single story is different. But, my eyes have been opened to a way of life for many in our community that I never gave thought to before.
Many times I am told that she is “so lucky” to have us. I do not agree. I am thankful every day that we were given the opportunity to have her as part of our family. She has given me perspective and understanding that I did not have before.
She is my greatest teacher. I can only do my best to pass on what I have learned from her.
October is Down syndrome Awareness Month!
To learn more, check out the National Down syndrome Society website.
