I was fixing Elizabeth’s hair this morning and may I add that her hair takes a village to do, as it is so curly and PUFFY! I am working on her doing her own hair well but it is a dyspraxic nightmare. I can remember trying to teach her how to put the hair gel on her hair. I told her to put some on her hand, rub her hands together and then put it ALL over her hair. She ended up with the gel on the top of her head only and in a blob as well. So suffice it to say, it is a work in progress! So anyway, I was doing her hair and then she went off to wash her face before her make up goes on. I was thinking of all the little behind the scene things I do for Elizabeth each day. Whether it making sure her clothes matched when she was younger to double checking for spots on her shirts to now encouraging her to remind me to touch up her nail polish when it chips. These are all little things but to me such important things. I have always known that Elizabeth wants to have matching clothes ( see my blog at www.talktools.com ), clean tops, fresh nails and so so many more things but simply cannot complete the tasks by herself. So we help her have what she wants. As she has grown and achieved, more detailed, skilled tasks greeted her. So we keep attempting new things and keep working. But in the meantime, it falls to us to help her with things she cannot yet do well.
I am thinking of these things because when you are the parent/family member of a child with special needs, most people think of the work you do to help them learn school work, social skills and even in our case how to say their first words. What people may not think about is the actual day to day care of these special children. When you see a hair ribbon on a beautiful child with autism, you can bet a family member had to work a bit harder than most to get that ribbon on that hair! Or if you see a cute outfit on a child in a wheelchair, you can bet that someone in that child’s life worked hard to make that happen! Each day there is so much self care that needs done for them, and in our case taught to them, that to get ready to go out the door takes twice as long as with typical developing children. ( and we all know that that can take a good while anyway!). And if your child has Sensory Processing Disorder ( SPD) like Elizabeth, the early years of dressing brought many a meltdown, that took so very long to recover from let alone get to the car. These are things many who know is do not know or may not realize.
I am currently sitting next to my dear friend’s daughter. She has special needs as well as being extremely medical fragile. But she is absolutely delightful. She is polite, sweet and quite the conversationalist. But something else, is that her mom takes such wonderful care of her. There is absolute love shown in all my friend does for and the beautiful care she takes of her daughter. As a nurse, I logically know the amount of care involved but do I really know? No, I do not. Does my friend provide me with the itinerary of her list of things she does? No, she does not. Do I really know how she cares for her every morning and night? Again, No, I do not. I simply know that her daughter is supremely well cared for I will tell you this. This mom is amazing and what she does she does for love.
And isn’t that what motivates us all? Don’t we all want the best for our children? Don’t we all work each day to help them, guide them, teach them and love them?
I sit here and think of these beautiful children God has entrusted us with. I think how much we should be there for each other,as parents and caregivers We may all share the same journey called “life with a special needs child” but truly, after that point each journey becomes unique, special and challenging. But something we can do is to be that support for each other. If you like that ribbon, let that mom know. If that outfit looks cute, tell that family. If that mom looks tired, smile and convey to her that you DO understand. I think the acknowledgment of those little things done for and with love, can make all the difference. And those comments can let them know all they do IS important and all the things they do DO matter.
I will be reminding myself of this as I tackle that hair tomorrow morning and those nails tomorrow night