I had some righteous indignation yesterday, coming from both ways. I went with a friend of mine to a local craft bazaar; we took our 2 daughters with us (keeping in mind that my little sunshine has her issues). We had barely gotten in the door when this old woman knelt down in front of my girl and grabbed her hand and said, "Come here honey I want to talk to you." WTH??
Elle(my daughter), of course, dived behind me to hide from the creepy old stranger lady. I casually stepped in front of her because OLD BAT WAS STEPPING AROUND ME TO GET HER. Again, WTH? And I said, "Can I help you?" instead of slapping her. To which she replied, "I noticed your daughter was looking at Vera. (To those of you who do not know Vera, she is an older lady with a pretty serious skin condition; she is covered in large moles/bumps all over her arms and face.) "I was just going to tell her that God made us all different and that He loves all of us, even Vera. She doesn't have to be scared of her." And I replied, "I'll talk to her about it, Thank you." We walked around this bat and I leaned down to Elle and told her to not stare, it's not polite. Left it at that. Seethed inside because I wanted to say:
1. My daughter is well aware that God made us all different. Thank you very much, she deals with that every day.
2. You've ruined our fun day out because you are a nosy old bitch. Invading a child's space like that, what good could possibly come of it? You've definitely done more harm than good today, with your "holier than thou" attitude.
3. Vera is a mature, grown woman who has had that condition her entire life. She surely can handle a small child staring. She'd probably rather that than YOU running your mouth around telling people all about it.
4. My daughter has a small, set amount of calm points that she can use. Just walking in the crowded building with all it's crazy noises used probably half of them, and you jumping in front of her like that used most of the rest. So now, all she can think of is getting out of here, instead of being excited to pick out her new hairbow like she has talked about all morning. I should slap you right in the face for doing that to her, you bully.
Instead, I dropped it. I pushed it out of mind and got Elle back under control. We looked at the booths. We avoided old bat, and Vera. She calmed back down; we picked out several hairbows, she wore her favorite home. She picked out new shoes, helped me find the perfect necklace. She wanted to get her nails painted, but just couldn't find the energy to overcome the anxiety of a stranger touching her hands was creating (she might have been able to without old bat getting in her face, but maybe not). We came, we saw, we left. When we got home, Elle asked me about "the lady with all the bumps on her body". She thought she was a witch, so we talked about it softly and calmly.
What's done is done. The only one even thinking about it today is me.
Sunday, April 18, 2010
Tuesday, February 16, 2010
The pendulum swings
One year, One week, one day, one hour.
It's astounding how much perspective can shift in such a little time.
4 years ago, it started officially. The search for help. The fear of what we would find out, the fear of what could be waiting for us.
3 years ago, I had a plan of attack, but no real answers. Life was calmer, a lull in the storm.
2 years ago, I got the answer I didn't want. Autism. After that intial flurry of testings, meetings, and planning we started to see slow progress, a lessening of all the anxiety and tantrums, a gradual acquiring of awareness. A shift from living in crisis mode to family life again.
1 year ago, wow. An avalanche. Changes for the better. Still some bad days, but I could breathe. I could hope. Our family could make plans. That may not sound like much to someone on the outside, but it was heaven to me to know I could get out of the house and do family things without a "sensory pack" and an emergency back-up plan. Most days.
6 months ago, one month ago. The difference is night and day. This year has been good for my baby girl. I hoped it would be. She's on track, she's holding her own in a regular Pre-K classroom, with no supports other than OT and speech once a week. And Mom for a teacher. She knows 21 letters, she can count to 30, she can ask for help, she will play with friends-when she wants to. She can not get her shoes on the right feet.
She can paint, she can get sand on her hands, she can ignore the A/C running and the squeak of her crayon to listen to her teacher's directions. She still talks to herself all day long. She says please and thank you-when she wants to.
It was a good, good day today. Tomorrow may not be as great, but so far so good. *Fingers still crossed*
It's astounding how much perspective can shift in such a little time.
4 years ago, it started officially. The search for help. The fear of what we would find out, the fear of what could be waiting for us.
3 years ago, I had a plan of attack, but no real answers. Life was calmer, a lull in the storm.
2 years ago, I got the answer I didn't want. Autism. After that intial flurry of testings, meetings, and planning we started to see slow progress, a lessening of all the anxiety and tantrums, a gradual acquiring of awareness. A shift from living in crisis mode to family life again.
1 year ago, wow. An avalanche. Changes for the better. Still some bad days, but I could breathe. I could hope. Our family could make plans. That may not sound like much to someone on the outside, but it was heaven to me to know I could get out of the house and do family things without a "sensory pack" and an emergency back-up plan. Most days.
6 months ago, one month ago. The difference is night and day. This year has been good for my baby girl. I hoped it would be. She's on track, she's holding her own in a regular Pre-K classroom, with no supports other than OT and speech once a week. And Mom for a teacher. She knows 21 letters, she can count to 30, she can ask for help, she will play with friends-when she wants to. She can not get her shoes on the right feet.
She can paint, she can get sand on her hands, she can ignore the A/C running and the squeak of her crayon to listen to her teacher's directions. She still talks to herself all day long. She says please and thank you-when she wants to.
It was a good, good day today. Tomorrow may not be as great, but so far so good. *Fingers still crossed*
Saturday, February 6, 2010
That door
I just got sucker-punched. Again.
I don't know at what point in the "journey" of raising a child with special needs that you can have a little distance, a little perspective, see things from a point of view instead of from the heart. I watched the movie Temple Grandin tonight. Cried like a baby. Totally related with the mother-took her pain into my chest and mixed it in with my own. Absorbed it in. Re-opened old wounds and poured a little more lemon juice in the hole for old time's sake. Why do I do that to myself?
It's a bad place to live-that "what if" world of self-doubt, guilt and grief I discovered the day I went into labor 3 weeks early and delivered a child that struggled to breathe on her own. In the five years since then I've shut that door to that world, firmly. Repeatedly. Turned my back on it and embraced the "that's the breaks Jake" attitude of learning, helping and growing as a family. Such progress and pride, not just for the amazing steps my daughter has made. I am proud of myself too, dammit. There was a time when I lived in that bad place. And cried myself to sleep for months. And prayed incessantly for a cure, for a way out. And walked in a fog of sadness, railing that MY daughter would not be the smartest in her class or the sweetest girl or even not be the one everyone made fun of and called names. And yes, that was the most pathetic and disgustingly selfish time of my life, but also my darkest hour. To have my own child be one that I couldn't teach was my worst nightmare. I felt absolutely useless and helpless.
So, lots of time and work have closed that door to that bad place. But sometimes I still peek in. And I still hate it there, and it still takes my breath away and demoralizes me. So I slam it shut again and go on out in the world.
Focusing on what is helping, what comes next, how far we've came, and how happy my whole family is. Remembering the blessings and counting this journey as a blessing and an opportunity to help others understand. Those are the nails and locks on that damn door. I hate that door....
I don't know at what point in the "journey" of raising a child with special needs that you can have a little distance, a little perspective, see things from a point of view instead of from the heart. I watched the movie Temple Grandin tonight. Cried like a baby. Totally related with the mother-took her pain into my chest and mixed it in with my own. Absorbed it in. Re-opened old wounds and poured a little more lemon juice in the hole for old time's sake. Why do I do that to myself?
It's a bad place to live-that "what if" world of self-doubt, guilt and grief I discovered the day I went into labor 3 weeks early and delivered a child that struggled to breathe on her own. In the five years since then I've shut that door to that world, firmly. Repeatedly. Turned my back on it and embraced the "that's the breaks Jake" attitude of learning, helping and growing as a family. Such progress and pride, not just for the amazing steps my daughter has made. I am proud of myself too, dammit. There was a time when I lived in that bad place. And cried myself to sleep for months. And prayed incessantly for a cure, for a way out. And walked in a fog of sadness, railing that MY daughter would not be the smartest in her class or the sweetest girl or even not be the one everyone made fun of and called names. And yes, that was the most pathetic and disgustingly selfish time of my life, but also my darkest hour. To have my own child be one that I couldn't teach was my worst nightmare. I felt absolutely useless and helpless.
So, lots of time and work have closed that door to that bad place. But sometimes I still peek in. And I still hate it there, and it still takes my breath away and demoralizes me. So I slam it shut again and go on out in the world.
Focusing on what is helping, what comes next, how far we've came, and how happy my whole family is. Remembering the blessings and counting this journey as a blessing and an opportunity to help others understand. Those are the nails and locks on that damn door. I hate that door....
Saturday, January 23, 2010
Do you see what I see?
I read someone's blog who said that when she told her dad about his grandson having severe autism, she expected to see shock, upset, and denial. Instead, he took a deep breath, paused a moment and said "Well, he's still our Matt."
Acceptance is a wonderful, wonderful thing. Kids may remark on differences but as long as they can relate in some way, they accept. I am constantly amazed as I observe children shuffled from parent to parent, parent to grandparent- aunt - friend; for some this cycle never ends. Drugs, alcohol, abuse, neglect, poverty...when it is everyday, it is the accepted norm. Honestly, would you give a rip about your multiplication tables or your homework when your home life consisted of a constant string of "friends" of your parents coming in and out of the house while you were sent outside so they could use drugs? Would you care about homework if Mom forgot to feed you dinner because she was too busy getting her drink on to remember she had a child? Would you care about your parents at all if they had been arrested, jailed multiple times for child abuse, molestation?
If you are a child...yes, without a moment's hesitation.
Yes, my child has some delays. She struggles, she fails by normal standards sometimes, she will most likely continue that trend her entire childhood.
But truthfully.....who has more of a chance to grow up to have a life worth living? The child that is left like a weed to grow wild, caring for themselves-not being nutured or loved or even accepted by the people who brought them into this world? Or my daughter-cherished, overly-protected at times, brought up by family, friends, church that loves her even when she fails to acknowledge it, provided for on so many levels?
And yet....
My daughter is the one with the labels. Developmentally delayed. Autistic.
And their children are Normal? I think not.
I look at my daughter, and I see a miracle in motion. I see her life stretched out before me and worst-case scenario...she lives in our house and we help her the rest of our lives. That is not a bad outcome, at all. That would be a blessing also. I want her to live life, be happy, love the Lord, serve the Lord. To stay away from drugs, sex and craziness.
What do They see when they look at their children, I wonder? From the outside, it looks like they see another mouth to feed, a mistake, a nuisance, something to use to their advantage, and on a good day-a friend to rely on,confide in, party with.
What they don't see is what I see.
Acceptance is a wonderful, wonderful thing. Kids may remark on differences but as long as they can relate in some way, they accept. I am constantly amazed as I observe children shuffled from parent to parent, parent to grandparent- aunt - friend; for some this cycle never ends. Drugs, alcohol, abuse, neglect, poverty...when it is everyday, it is the accepted norm. Honestly, would you give a rip about your multiplication tables or your homework when your home life consisted of a constant string of "friends" of your parents coming in and out of the house while you were sent outside so they could use drugs? Would you care about homework if Mom forgot to feed you dinner because she was too busy getting her drink on to remember she had a child? Would you care about your parents at all if they had been arrested, jailed multiple times for child abuse, molestation?
If you are a child...yes, without a moment's hesitation.
Yes, my child has some delays. She struggles, she fails by normal standards sometimes, she will most likely continue that trend her entire childhood.
But truthfully.....who has more of a chance to grow up to have a life worth living? The child that is left like a weed to grow wild, caring for themselves-not being nutured or loved or even accepted by the people who brought them into this world? Or my daughter-cherished, overly-protected at times, brought up by family, friends, church that loves her even when she fails to acknowledge it, provided for on so many levels?
And yet....
My daughter is the one with the labels. Developmentally delayed. Autistic.
And their children are Normal? I think not.
I look at my daughter, and I see a miracle in motion. I see her life stretched out before me and worst-case scenario...she lives in our house and we help her the rest of our lives. That is not a bad outcome, at all. That would be a blessing also. I want her to live life, be happy, love the Lord, serve the Lord. To stay away from drugs, sex and craziness.
What do They see when they look at their children, I wonder? From the outside, it looks like they see another mouth to feed, a mistake, a nuisance, something to use to their advantage, and on a good day-a friend to rely on,confide in, party with.
What they don't see is what I see.
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