Some recent comments on some of my posts, coupled with some email exchanges, have been on my mind lately. Some of you have commented to me how I have or my family has “been through so much worse than we have,” or “I know my situation is nothing like what you’ve been through,” and things of that nature. I wanted to respond to those well-intentioned, self-effacing, sometimes self deprecating words. (No, wait, don’t leave…it’s good stuff, honest!)
We all sing with the same voice
The same song, the same voice
We all sing with the same voice
And we sing in harmonySesame Street
I suppose to someone looking on from the outside, yes it is true; my family, my child especially, has been through very much. On one hand we have the fact of Nik’s extreme prematurity and all its inherent health-related issues. Educators and health care professional are often surprised to meet Nik for the first time; the child they read about on paper is frail and sickly —potentially a child to be pitied for his immense challenges in his short little life. The child they meet is a dynamo —uncomprehending of the word “disabled” or the fact that he isn’t like his typical peers.
On the other hand, I think, in many ways, parenting my child with his myriad needs and diagnoses has been easier for me than parenting your child may be for many of you —my very special friends. While it’s true that our daily life with Nik is often an intricate contredanse in which we must weave threads both medical and developmental, Niksdad and I have had the benefit of being hit with the worst case scenario from before Nik was born.
We already knew that our child may not be “normal” based on ultrasounds showing how small he was for his gestational age. And, certainly, we hoped and prayed for the most normal of possible outcomes. Yet, when it didn’t turnout the way we would have preferred, we made a very conscious decision that our child would be loved and encouraged and believed in —no matter what. We had to throw our expectations out the window from the moment Nik took his first breath with the help of the respirator.
Many of you, my wonderful friends, had what I might call the storybook experience of pregnancy and childbirth. Though there may be some cases where there were some prenatal complications, by and large you had your robust, healthy child who went home from the hospital the same day you did —again, with some few exceptions. You joyfully announced your child’s birth, shared photos, breastfed, and generally raised your completely normal child.
Then you were blindsided by this thing called autism. However it came, whenever it came you were not prepared. You didn’t have the luxury of being able to “gird your loins” as Niksdad and I did. In an instant, everything you knew about your life with your child was changed —radically. I cannot even fathom the shock and overwhelming grief this must have caused. At least, with Nik, I have some idea of the cause(s) of many of his underlying disabilities. I wish that you each could have that for your child. I know that there are many things I cannot undo or fix for my child —things that simply are what they are. I sense, in so many of your writings, the pain of the search for answers, reasons, and understanding—for something you can identify over which you may be able to exert some measure of control.
I recently wrote to one of my dear online friends (and I do consider you to be a dear, dear friend —a kindred spirit —though we’ve not yet met) that I sometimes think the issues our children face in school must be more difficult for a her child than for mine. Whereas my son is more obviously disabled —and has the medical dossier to support him in the face of those who might wish to deny him access and acceptance —her child appears to be just like every other child at school. My son is in a segregated school with dozens of other children like him to varying degrees; the school staff is trained to deal with all kinds of variations on the theme of disability. Her son must make his way in a school where “Special Ed” may still have the negative connotations of previous generations. In some ways, we really haven’t come as far as we think we have.
Indeed, I read a recent post on Redhead Momma’s blog in which she relates a conversation with a principal of a neighboring school —in which the principal expresses her ignorance of autism and how autistic children can benefit from a variety of teaching and therapeutic techniques and measures. I was absolutely floored to read that until I took a step back and realized how fortunate we have been to have a school like Nik’s —imperfections and all. There, he is completely accepted and loved for who he is where he is —right here, right now.
In the final analysis, I must confess, there are times I stand (well, sit actually) in awe of my fellow special needs mamas. To me, you have had it rougher —tumbled like a trailer in an unexpected hurricane —and have risen so beautifully to the occasion. I learn much from the things you write on your own blogs and in comments on mine. I think that is what I love best about this cyber kaffe-klatch we’ve got going here —the recognition that we are all the same in our differences yet different in our sameness.
“We all sing with the same voice” and the song we sing is that of a mother’s love for her child. The notes and harmonies we create together are powerful and breathtaking. Let them be sung from the mountaintops.
“Same difference” is a phrase Jim likes to use a lot. I’m often frustrated when people, with the best intentions, start to “compare disabilities” or how many challenges a child does or does not have. I really do believe we are all in it together, and the wheel goes up and down as far as things being “easier” (well, a bit less stressful) at sometimes for some of us and then at different times at others.
The photo makes me think of another Sesame Street song, about all of us being earth(lings) (I think that is the title!).
I keep coming back here and then leaving without a word because I can’t think of anything to say.
So, I’ll just say this: thank you. And yes, you are right, about all of it.
Thank you for this very generous post. Sometimes the hidden handicaps like autism do indeed get short shrift from unsympathetic teachers and professionals. I’m very moved to see that the mother of a small child with severe, multiple handicaps can reach out to others like me who’re seemingly “luckier” with our auties and aspies. How many of us would want to walk a mile in your shoes?
In these days when handicap is pitted against handicap as parents vie for funding and the media spotlight for their particular issue, I’m awed by your capacity to rise about such petty rivalries.
I’m also awed by Nik himself. He has indeed come a mighty long way from very uncertain beginnings, thanks to the devotion you and your husband shower on him. When I look at the tiny baby in “Happy Monthiversary” and the sturdy, cheerful, little boy who can climb out of his crib, I take off my hat to you and bow in deference.
I am a mom with a disability and my son has no disability you put into words something that I have tried to tell many people about myself. We all face challenges in our life. I just wish we all could just support each other with out some of the comparisons.
I love reading about your days. It makes me happy knowing how much you care for your little boy and finding out all the special things that happen each day.
I wouldn’t call it “comparing”, in the sense of the “Keeping up with the Jones” kind of way. I like to believe that, in looking at another’s life and thinking, Wow. Look what they overcome. it gives us the courage to press on in our own struggles. Perception is reality, if you know what I mean. The accomplishments of your family give me the courage to continue on my path. I thank you for sharing them and allowing me to fall madly in love with your little Nik!
In my mind and in my heart, we are all just parents doing the best we can for our kids. I think most people would do the same.
Melissa, yes, that’s it exactly. I think from our experiences in the NICU (which I haven’t really shared much of yet), we saw families going through such a variety of challenges and emotions. That experience, and the fiesty determination of my own child, is what has kept me going on the days I wanted to just lay down in the middle of the road (only figuratively). I watched 2 babies die without their families there, another family that was unable to let go of their child who was so ill and so far past the point of any will to live…things that just are not the natural order. It humbles you and makes you grateful for every little moment and milestone.
And, FWIW, I am always happy to provide opportunities for people to fall madly in love with my son!
You are right, you really can’t compare. I alternate between feeling I’ve got things harder than other people and feeling like I’m incredibly lucky, but I know there isn’t a simple answer. And your last comment reminds me that we are very fortunate that we got out of the NICU…it was a stage rather than the whole life of our children.
About the coloring you mention in your last post: just today I taped some pictures to our mantlepiece–very very faint marks with a crayon, but so beautiful! Keep it up, Nik (and all of our budding artists).
I have not been able to be around much lately. I am either working-going to school-doing homework-going to IEPs-volenteering at school-talking with doctors-talking with therapists-eating and sleeping…
See we are very much the same.
We are all also very much different. That is one thing that makes us interesting to each other.
I love this blog!
I have to say that I’m not sure I really had “friends” until we were inducted into the special education world. Of course, they didn’t turn out to be the people I thought were my friends. But we are now surrounded by people who really care what is happening in our lives. We share a connection.
And although we’ve been in the same room together, I am truly feeling blessed by the relationships we’ve found through our blogs. There is such honesty and sisterhood out here and the connection is something I have really needed for a long time.
Life has thrown each of us a curve ball. Some got it on the first pitch while others a couple innings into the game. But what impresses me is that we are all still in the game. And what an interesting game it has been!
Thanks for your beautiful post. And as always, thanks for sharing your beautiful boy!
This made me cry. Thank you so much for understanding. As Kristen said, you’re right about all of it. Every bit.
I am constantly reminded (quite a bit this summer especially) that everyone’s life is messy and everyone’s family has challenges. Some may seem more messy and challenging than others, but the common understanding is what helps us reach out to one another.
We all learn from eachother’s experiences. Very different, but all in it together!
Great post!
this is beautiful. thank you so much for writing it. i loved every word.
Thanks for acknowleding the difficulty we autism moms face. The: he-was-fine-and-now-he’s-gone phenomenon and hardly anybody knowing what to do, what happened. Like a house dropped on us.
STILL, I can relate to all parents of special needs children. I so get it.
This is beautiful writing.
I so agree with what you said. I think it was so very hard for me because my son reached all of his milestones and then he just “lost” a lot of his skills. I felt lost, sad, defeated. But I picked myself up, dusted off and said, “Okay! What do I need to do to help my son be the best he can be?” I still cry, I still hurt, but I keep plugging on and I know it is paying off just by seeing my little man and all of the progress he has made.
Your Nik is just beautiful.