I asked some of my fellow superhero parents what they wish the world knew about raising a child with special needs and this is what they said:
1. You likely do not realize all the extra things that happen in our day that take up time. There are extra feeding times, equipment to haul around, catheters to change, therapies to do, diapers to change well past the "normal" diaper age, extra dishes, extra food to make, and phone calls and emails to specialists. These are just some of the extra things we do on an everyday basis.
2. We promise we are not ignoring you. You know those well meaning phone calls and texts that go unanswered? It is not because we are trying to ignore you or do not want to answer your questions. Generally, we are too busy during the day to look at our phones and by the time our child or children go to bed at night, we are so overwhelmed and exhausted from the day to put our energy towards one more thing. Please forgive us. Please continue to reach out, even if we do not answer, seeing that you called or messaged us shows us you still care.
3. We've changed. Each stage of life brings about change for everyone; parenting is no different. Special needs parenting however, brings about a whole new change. It is not easy for us to find sitters that know how to care for our children's extra needs, so we cannot always go out with you. We wish we could drop what we were doing and go grab that burger or go watch that movie. Even if you ask us a month in advance and we say yes, something could come up and we have to say no(this happens more than we would like). You've probably noticed us worrying a little more than normal, being more detail oriented than before, and likely more exhausted than you have ever seen. It all comes with the territory of having to keep track of appointments, changes in our child's behavior and progress, and having to be the parent/therapist/nurse/doctor to our child. Please keep inviting us. Please keep asking how we are doing. We want to do things with you and feel included.
4. Please ask us about our child. Have a question? Please ask. Your questions are far less offensive than the staring and whispering. We would love to tell you all about our amazing children and the differences they experience.
5. Don't take for granted the neuro typical children in your life. That last minute trip to the beach or the last minute trip to the cabin, please don't take those for granted. It is not easy for us to leave the house, even when we plan it. We need to make sure we are planning trips that are inclusive for our children(news flash: the world was not made for people experiencing disabilities so finding inclusive activities is really hard). The world was not made for children like ours but by golly we are going to make sure they feel included.
6. Parent guilt is real and amplified. We have all heard of mom guilt. It's real and its hard. There is a thing called special needs parent guilt. It's when we feel like we are not doing enough for our children. Those times when we feel like we should have worked on therapies more, provided more space for interaction with other children, or advocated harder. We are exhausted. We have a head knowledge that we are doing the best we can but the heart does not quite get the message. This is often amplified for the parent that cannot be at every appointment or home during the day to help carry some of the extra weight. The parent that cannot be there often feels like they are not doing enough and providing enough support to their child and partner. This parent often wonders what doctors and therapists think of them when they are not there. They want to be more present. Throw some encouragement our way. Remind us we are doing a good job. Point out examples of what you have seen us do lately that inspires you or really something that really stood out to you.
7. Lack of sleep does not end after the newborn stage. Children with disabilities often have troubles with sleeping which means parents are up during the night as well. We have likely tried every trick possible in order to get more sleep but those tricks just don't work. Overtime the exhaustion takes a toll on us physically, mentally, and spiritually. We smile because we don't feel like explaining again and it's just easier to fake it till we make it.
8. Advocating is not a privilege, it's a way of life. Our children need services, equipment, specialized food, education modifications, etc. and often those things do not come easily. We have to fight with more people than we would like to. We have to spend hours on the phone with insurance companies and when that doesn't work, we have to ask doctors and specialists to fight on our behalf. We have to fight with school staff so our child can get what they need and not just what is "good enough". We are the voices of our children when they don't have one.
9. Cleaning is not just for COVID. Right now everyone seems to be extra cautious about cleaning their homes, areas of work, and washing their hands. This is our everyday life. Bringing home a sickness to our child can be really harmful to them. These precautions the world is taking right now are precautions we take everyday.
10. It is all worth it. At the end of the day, through all the exhaustion, our children our worth it. Through the therapies, appointments, and phone calls we love our children. Each milestone is celebrated with cheers and jumping around. Some days are harder than others and we may complain about all the extra things we need to do but please do not ever think we would trade our child for anything. Having a child with special needs has opened our eyes to an amazing world with amazing people.
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