A Little Insight... Day to Day with A Special Needs Child

I'm sensitive, I know this about myself. Sometimes I hear things like, "You're so sensitive." or "Don't be so sensitive." Sensitive isn't always a bad thing.

When it comes to strangers I can typically brush it off... I mean the dirty looks, the rude comments, the bad hand gestures.  I know I'm doing the best I can.  If they don't get that, well then it is their problem and I won't make it mine. Maybe they've had a bad day or they're going through something, whatever.

I'm better at brushing it off some days more than others.  The other day at Costco my daughter was her typical self:  touching everything (sometimes with her mouth), babbling-consonant-sounds-not-typical-for-her-age... behavior I am used to. But "Miss Wide Eyes" was not used to this behavior and made it apparent that she was disgusted. I hurried out as fast as I could, ignoring my son's requests for a churro and sat in the car and cried.

She will go home and not give it another thought, or maybe she'll tell people about the "gross thing" she saw at Costco, but I let it ruin my day. I'm not sure why I do that or why I sometimes can't just shake it off... like I said, some days are better than others.

My life will go on. I will continue to see all the good that comes with the bad. I will appreciate the consonant sounds from my child for the beauty they are. I will love the movement and touching coming from a child who was once confined to a bed. I can get up in the morning and know that everyday there are miracles, every day life changes, every day there is good and there is bad, and I will choose to look for the good.

Think of how many people you can affect. A smile, a kind word, an understanding look... these things can make such a difference. As a woman who knows that some days are better than others, I hope that the people I come in contact with are better for it, or at least that I don't ruin their day.

A Little Perspective... The Little Things

My five-year-old took four unassisted steps a few days ago.  After waiting for four-and-a-half years for this, I stood there in awe; followed by jumping up and down and clapping (encouragement means everything to her.) First of all, not only did she walk independently, but she choose to do so. She wanted to get from point A to point B and rather than get down and crawl, she walked. It was very exciting.

We were at the park the other day, playing, swinging, sliding, running; I was doing most of the running, trying to keep my little one out of the street and in the park. Finally I made the announcement that we would leave in five minutes. In an attempt at distracting the one who couldn't run races, climb the ladder to the slide, or propel herself on the swings, I took her hand and began to walk along a path. I wasn't sure where the path would lead, but we could always turn around. I left my husband to watch the others as I took her hand and watched her feet, marveling at the strength she was gaining.  I watched, remembering a time when she couldn't raise her arms above her shoulders. A time when little muscles had grown so tight from non-use that range of motion was limited to reaching from a prone position. I was so busy looking down at little feet, that we had gone farther than intended, and realized our little walk was symbolic of our life together.  Most of my daughter's life we have spent moving along, not knowing where we are going. Sometimes getting farther than anyone thought we would. Most of the time we have no idea how far we will go or when the path will end, but we keep moving, enjoying the steps along the way. 

In reality, do any of us know what the future holds? For ourselves, our children, or those around us? Most of our days are spent just moving along not knowing where the path will go. We hope, long, pray, and dream. We imagine wonderful things ahead and plan for the things that might not go as we anticipate. But hopefully we also enjoy the steps along the way. The little moments that make each day so worth it. So tonight, while I stand at the sink and wash the dishes maybe I should enjoy the quiet of kids getting ready for bed. Or tomorrow, when I walk my littlest to preschool, I should relish the fact that he will still hold my hand. Are there things that keep you going when you aren't sure where the next turn will take you?

A Little Sensitivity... The Strength and Vulnerability of Special Needs Children

photo:  impactlab.com

In some ways my third child is the toughest little girl I know. She has been through so much, how could she not be one tough girl?  There were days in the hospital that she would be in so much pain. She would look in my eyes and my tears would begin. Quiet tears running down my face, because I knew how much my daughter was suffering. I would hold her hands and sing her songs, sometimes the song would bring her heart rate down and I could watch the effect I had on my sweet daughter. She went through withdrawal while in the hospital and had one terrible Thanksgiving weekend where the pain was so visible in her tiny, shaky one-month-old body.

When she came home there were still days where she barely moved she was so weak. And when she got RSV, pneumonia, and an ear infection all at the same time, you could hardly tell, which is why it got so bad that we ended up taking an ambulance from the doctor's office to the hospital. I had no idea she was so sick, but the decline happened before our eyes and scared her doctor and me into calling for the ambulance.  

For the first two-and-a-half years I had to give her shots twice a day and she would barely flinch.  Her strength was a blessing and a curse, I was so glad that she fought so hard and I am proud of how strong she is, but I am sad that it has to be that way.  So often it broke my heart to see her have to stare down pain when she should be learning to roll over or crawl or coo. I watch her strength and it makes me want to be stronger, drives me to be stronger.  As I run I think about the things she fights through, the things she may or may not be able to do. Do I take my strength for granted?  My body does what I tell it to, usually with little pain involved.

But then there are her little feelings; I am so afraid for the future of those feelings. Sensitivity is such a double edged sword.  While I know she would never intentionally hurt anyone, the hurt feelings are tough to take. And her feelings get hurt more than others.  How can this tough little girl be so soft hearted? She is this sweet little girl who is devastated by being told no.  When she gets hurt, she is more upset by the fact that someone would hurt her than the actual pain.  She has a very distinct "hurt feelings" cry, as if her heart, that same heart that endured being cut into time and again, has broken. 

The worst part of this sensitivity is our knowledge of what's to come.  Unfortunately, kids can be mean. For that matter, adults can be mean.  I was reading an etiquette column the other day and I was surprised by how old-fashioned the advice seemed, how refreshingly old-fashioned; the advice to think first, to hold your tongue, to err on the side of respectful. But that isn't always the case, sometimes people don't think first. Sometimes I get teary when I think of the things she may hear or see, the way she may be treated and the way that will make her feel.  Will the safe comfort of home be enough to keep others from breaking her spirit?  If I tell her over and over how wonderful she is, will it be enough to make her know it?  Will it be enough for her to keep her kindness without bruising her sensitivity?  

A Little Understanding... Responding to Childern with Special Needs

by Somer

I have a daughter with special needs. At first glance she doesn't look different. She looks like any other quiet three-year-old sitting on floor or in the shopping cart; only she isn't three, she's five. She isn't quiet, she's actually quite noisy, she just doesn't say words. Oh yeah, and she is sitting because she can't stand unassisted.

My five-year-old daughter has complications of open-heart surgery. For six months following her birth she was in ICU fighting for her life. When she did come home she was on a ventilator with a feeding tube and pulse-oximeter. Her pretty little nursery became more like a hospital room and I became a lot like a nurse. 

When people see her they may want to ask, "What is wrong with your daughter?" But I would prefer they see what is right with her. My girl has the most love of any kid around, but only when she knows you love her. She smiles huge and laughs with her whole body. She loves music and books, and anything on the Disney Channel. Since most of the normal things aren't readily noticed, and since I can't always control the way she responds in a situation, maybe we can approach the way you may respond.  I don't know if all parents of special needs children feel the same way, but this is how I feel.