Thursday, December 6, 2012

Truthful Thursday - Parenting a Special Needs Child


***Submitted by Anonymous

A note from Ellie: it takes so much courage to write a piece like this - every mother, not just mothers of a special needs child - can identify with a pang of shame about their kid.  NO comments that are inflammatory in any way will be tolerated.  This is a community of empathy and understanding, so please offer your support.  Thank you.




This morning, I drove around town looking for day cares for my younger daughter.  A few years ago, this process was very easy. Back then, I was searching for a spot for my now-3 year old, a clever and witty kid who has always exceeded any goal put before her. Back then, I bounded in to each Director’s office, declared that we needed a daycare, and was met with a welcome party. They practically begged me to enroll.

But with my 1 year old, the process is much more difficult and brings about very painful feelings of shame. My younger daughter is beautiful, smiley, and loving. She will reach out to any stranger and quickly bury her face in his shoulder. She will stand at her sister’s train table and laugh with glee at just the experience of being alive. She teaches me about true happiness. But she also has a very rare syndrome, one that causes developmental delays along with some health problems.

So at 15 months old, she isn’t walking or talking. I’m quick to say that she’s cruising, but she really isn’t. Cruising signifies gripping onto the couch and moving her way along. She’s taken a step or two, but I certainly wouldn’t call it cruising.

Today, when I met with each successive Director at another prospective daycare, I bragged that she was cruising. You see, they won’t move her into the toddler room until she’s walking. She needs to be “steady on her feet and confident.” Until she reaches that milestone, they’ll keep her in the infant room with 6 week old babies. However, sitting in an infant room all day will impede her development because she needs to learn from the older kids. But the Directors are adamant that any child who isn’t walking needs to be with the babies.

 All day long, I’ve had to explain her delay – had to reveal her syndrome. And I felt such shame. I’ve gotten way past the point of blaming her for any of this. I’ve moved well beyond those heart-wrenching and hurtful feelings of only a year ago. But I had to reveal that my child isn’t perfect. I had to explain the characteristics of her syndrome and then, upon seeing one worried look after another, had to follow-up with a happy-faced, bubbly disclaimer: “She’s doing so well though! She’s practically a typical child!” At one point, I said, “You wouldn’t even know there was anything wrong with her!”

That’s when one of the Directors looked at me kindly and said, “There isn’t anything wrong with her.”

I felt such shame. I’m supposed to be her unconditionally-loving mother. And I need someone else, a stranger, to tell me that there isn’t anything wrong with my child?

 But…if there isn’t anything wrong with her, then why did the Director then say: “Of course, I’ve never heard of this syndrome. So I’ll need to check with HR…”? Her sentence trailed off, but it’s obvious that she meant “…before we accept your application.”

I want so badly to accept my daughter for who she is. I don’t want to feel any shame or embarrassment when talking about her. But every time I have to beg to get her into another daycare, I feel that I’m explaining away who she is. I’m asking strangers for forgiveness over the needs of my own, incredibly special child. 

6 comments:

  1. I've been where you are. I'm curious to know what syndrome your little girl has. My son has Angelmans syndrome. He's 27 now, but I do remember those days of looking for a daycare. I explained his syndrome more times than I can count. I felt shame as well. I love him more than anything in the world. He is my sweet angel.

    I believe that God puts these beautiful children in our life for a reason. My son has taught me so much. He doesn't speak, but his eyes tell me how much he loves me. I would be more than happy to speak to you privately.

    LindA

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  2. You made me tear up. I can relate, although my daughter's special needs diagnosis is mental, not physical. She has a panic/anxiety disorder and behavioral problems. It is so hard to walk that line of telling people/ teachers/ schools about her issues so they can help, but not wanting her judged at the same time. It sucks to send her on sleepovers with several bottles of medication and have parents eyes go wide as they ask what they are for. The words 'anti-psychotic' hurt more than anything. I blame myself, for passing on my bad genes, for mistakes I made during pregnancy or perhaps how I raised her as a baby. But like Linda B, I believe God wanted her to be my child, that he put us together for a reason. So I soldier on and try to be the best mom to her I can be.

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  3. My husband's sister was "special." She had spina bifida and hydrocephalus when children born that way simply didn't survive. But she did, brave soldier that she was. Everywhere she went, she challenged what people's notion of "who is valuable" was. She could not walk, could not control her bladder or bowels, could never read past a grade six level and her comprehension only got to be at a grade three or four level. However, she was our angel unawares, teaching us that it's more important to feel than to have the right answer, to love than to judge, to be patient and wait for her to finish speaking than to rush about, finish her sentences, and rob yourself of a marvelous encounter that could change your attitude and brighten your day. Or your life.

    She taught me to look past appearances, to look for abilities, to slow down and enjoy the moment. She taught me (to paraphrase John Donne) that every person is my superior in that I may learn something from him or her. When our own "special" children came along - misdiagnosed for years and finally properly diagnosed, one at 13 with basilar artery migraines (we had to do the research and tell the Dr what she had!) and one at 14 with ADHD, I got a first-hand glimpse of those feelings you allude to, and there have been certain irrefutable facts (though very difficult) that I've had to accept. One of those was that I needed to meet each educational professional every year, armed to the teeth with the research in hand, so as to teach the teachers what they needed to know. Every. Time. It did get tiresome after a while... but it had to be done.

    I know it is difficult to "explain" your child's syndrome - people are ignorant. That is, they just don't know any better. It's not their fault for not knowing (you are not explaining, you are educating) and it's not your fault that you precious, loving child doesn't fit their mold. That their fear of the unknown holds them back from accepting her into their establishment ... is THEIR loss. You WILL find the right place for her, even if it takes a little longer.

    I wish you all the best as you continue to advocate for her.

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  4. No matter what our situation, it takes so much courage to admit that we’re human and fallible. Thank you for this honest and brave post. I’m sure many parents are giving a sigh of relief that they’re not alone in the experience.

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  5. My daughter is the same age as your youngest, and I can relate to your story on many levels. You brought tears to my eyes! This parenting thing is not easy - and protecting our beautiful, perfect children (and they are ALL beautiful and perfect) is so hard. She is lucky to have a mama who is so aware and honest and devoted. Wishing you strength, especially as you deal with this daycare stuff!

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  6. Life is full of contractions. Like the Director saying of course there's nothing wrong but she would have to check. Smile and let it go. Your a Good Mom - a very Good Mom : D

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