Often I don’t share my feelings about this part of my life, because it seems to drain me even more than I already am.
About 6 million children in the USA alone are considered “special needs” and receive special needs education. This includes any cognitive, physical, or life-threatening illness.
My 14-year-old Christina is one of them. She was born with Down syndrome, which means she has an extra copy of chromosome 21. This causes her to have an intellectual impairment and some physical differences.
To help others understand what goes on in the life of a Mom with a special needs child, here are 5 things you should know – at least looking through my eyes:
1. We are tired. Being a mom is already difficult and tiring, but parenting a child with special needs, adds a whole other level of fatigue and another dimension to the word “tired.” Even if I had a good night sleep or got some time away from my special needs child, there is a lingering level of emotional, spiritual and physical tiredness that I cannot explain and that is always there. It simply comes from tending to the never-ending needs, like the high amounts of doctor- and hospital-visits. The therapies, the time spent researching for better solutions, better teachers, better schools, better neighborhoods to live in, etc. Time spent advocating in the school-system and in the medical arena. We are always appreciative of small favors and acts of kindness, like arranging your schedule around ours, because our schedule is not very flexible, or like watching my daughter for a few minutes, so I can talk with another mom or run an errand.
2. We are scared. We always worry that we are not doing enough or not the right thing. We worry about our child’s future. Will they or can they or should they get married? Will they be independent one day? We are scared and worried about their physical safety. Like, when we are not around, who will hurt or bully our defenseless children? We worry, because our children cannot protect themselves like a typical child can. We worry about money and finances. How will we pay for the medical needs, especially if we don’t want our kids drugged up by crazy, money-hungry, ignorant doctors, but choose to go the natural route, which is not covered by insurance? We are scared of pain.
3. We feel alone. Often we feel like outsiders and lonely in our journey. It’s hard to hear other parents brag about the accomplishments of their typical kids. It’s even hard to brag about the incredible accomplishments my other typical children have achieved, and I often ask: ”Why was my Christina left out and left behind? Why her?” Only a mom truly understands the uniqueness of her special child, that child’s challenges and strengths and with that comes solitude and loneliness.
4. We are excluded and shunned. Whether you realize it or not, we are outsiders. People simply don’t or don’t want to understand our child with special needs. We have heard parents of typical children complain about how our special child is holding their typical boy or girl back from academic advancement or people complain that our child did something that they consider rude and unacceptable. But what they don’t realize is, that this very child they complained about, had to go through open heart surgery, kidney surgery, stomach surgery, every kind of surgery you can imagine, and not just once, but often numerous times. They had to and have to endure more pain, discrimination, bullying, and exclusion than any typical person will ever have to endure. Sometimes it is even too hard to get our own family to understand just how stressed we are. So please, extend us and our child an extra measure of grace.
5. We are human. We do our best to make our family life look normal and act like everything is fine. But it’s a facade. We have been pushed and challenged beyond normal human limits. Conquering the very obstacles that come with raising a child with special needs, helped us grow into the soft-hearted, generous and empathetic women we have become. We could never be THAT without our child, whom the world has chosen to ostracize. But we are still like the mom of a typical child: we get cranky and unfair. We get irritated and angry. We love to go shopping and get away. We love good food, a hot cup of tea or coffee while sitting in a spa and getting pampered. We still have aspirations and dreams for ourselves.
I was raised in a country that values education and accomplishment above all else, so consequently I have judged myself and others through that harsh lens. But when my Christina was born with Down syndrome, that lens was broken, because her cognitive impairments make high-end achievements and even ordinary performance difficult or even impossible. I had to learn that we have to meet people where they are at, not where the world says they should be! Individuals with special needs shatter all the “should be’s” that we idolize and build our lives around. They teach us things that are most important: Patience, Understanding and Love!
Please know, that we moms who raise a child with special needs, appreciate the smallest efforts…like making us feel special and loved.
Please share this article with a friend or someone that could benefit from this information and write to me at: firstname.lastname@example.org and tell me what your dreams and aspirations are.