Miracle would suggest that a wand had been waved and that with a smattering of fairy dust, all was better. All the pain and angst erased from memory, nary a stumble or hesitation from this point forth, that the path ahead was clear and easy. Hmmm…a magical feat indeed! Perhaps in the dark recesses of my being there is a little voice wishing with all her might that this could be so. Yet, I can tell you that the only supernatural event occurring in our house is our dogged determination to get to the bottom of our daughter’s underlying mystery.
That a solution to this puzzle even exists, I am immeasurably grateful, but the way is murky. Twists, turns and backward steps are constant companions. Self-doubt, worry, frustration and the ever-present weariness hang on me like burrs on my socks, pricking and making their presence known at every move. I have given up my former life to find our daughter and bring her back. And although sometimes I miss whatever it was I used to do, I am propelled forward by the changes and improvements she has made.
Yes, I am perhaps more jaded in the way I look at life, but perhaps that is to be expected. When the blinders of naivete are peeled away by the sting of reality, it’s hard to prevent the skeptic’s shell from forming. I no longer have implicit faith. In contrast, I also know that even though I encounter periods of insecurity, I am more confident in myself, and my abilities. I know that somewhere in here, I have found my voice and with each event it becomes a little stronger.
And although there is no magical pill for autism, there is hope. That with hard work and dedication, I, like hundreds of other parents, am putting the pieces of our daughter’s puzzle together. Through the shadows we are touching the hidden lives of our children and slowly drawing them forward into the light, and for the first time, getting to know who our children really are.
That, my friends, is the ‘miracle’ of intervention.
Friday, July 25, 2008
Thursday, July 10, 2008
There Are Days
Journal entry dated 25 April, 2007. It had been nearly a year since our daughter was diagnosed, and she had been on the DAN! Protocol for about 3½ months.
“While my life is not nearly as wacky and difficult as depicted in some stories about autism, there are days.
There are days when it seems like no one "gets it".
Like, trying to convince her Pediatrician that she really does have a problem and I am not an overly neurotic mother creating problems where there are none. That her screaming and panic at the sound of a vacuum is NOT an attempt to get my attention and that her self-limited diet is not because I haven’t offered her a dozen other foods a bazillion times.
Or, like trying to convince the County that she really does have processing issues. That she doesn't get it if I say, "Get dressed." but she understands when I say "Put your clothes on." That if you get her going on her own topic, she’s fine, but try to teach her something, and sometimes you just get a blank stare, drifting or screeching. And if you listen carefully, the tenses, pronouns and words are just plain wrong and out of order.
And, feeling like I have to always explain her behavior to well-meaning friends and neighbors. That she can’t just come over and play because I still have to ‘trail along on the sidelines.’ That her manic running around is just that. Manic. This is not an excited child running around playing WITH other children, she’s totally out of control and if I don’t keep a lid on it, she’ll give you quite a show when it’s time to leave."
[But, it wasn’t just about others not getting it…it was also about me, and the never-ending questioning, second-guessing and guilt that was my constant companion.]
"Not really knowing whether having friends is something she wants, likes, needs, misses or doesn’t care about.
Further isolating myself by bucking the overwhelming pressure to enroll my child in extra-curricular activities.
That having autism spectrum disorder: Pervasive Developmental Disorder/Aspergers, Anxiety, ADHD, Receptive/Expressive Language Disorder and Sensory Integration Disorder, doesn’t mean she isn’t cute, adorable, pretty or smart.
That even though I’m grateful my child is high functioning, I am still disappointed.
That no matter how much I confront the sadness and discomfort, and feel like I’m handling it and dealing with it, I am sidelined by an innocent event, observation or comment and feel like I have to grieve it all over again.
The guilt over knowing that if I’d done something sooner, we’d be that much further ahead.
Now that she is diagnosed gluten and casein intolerant, the needs of a special diet have added to the strain. It isn’t just as simple as going out when I’m tired and don’t want to cook. I still have to prep her meal.”
As I mentioned, by this date, she had been about 3 1/2 months into biomedical. It was frought with ups and downs and I was trying so hard to understand our ‘new’ child. So much information was coming at me all at once and I had no idea how I was going to keep track of it all and worse, I was very afraid I was going to make a mistake. I remember staying up until the early morning hours researching, trying to make sense of it all. I got over that hump, like I’ve gotten over many ‘humps’ after that.
Biomedical has given us our daughter back, but it has come at a price. A price certainly in monetary terms, as well as costly both physically and emotionally for me. As I like to say: “The apple hasn’t fallen far from the tree.” Meaning, like many parents of these children, I too suffer from body imbalance. And like many of the caretakers of these children, my health has taken a hit for the burden is great and I, too, have benefited from a variant of the DAN! protocol.
But health isn’t the only thing that takes a hit. Relationships do too. Whether married or partnered, the relationship is a dance. Adding a child, and special-needs one at that, takes things to a whole different dimension. If the relationship is on unsettled ground to begin with, there is little foundation to see it through when the demands of a special needs child comes barreling in. Add to that the differences of opinion when it comes to treatment, and it becomes a lighted fuse. Divorce rates are high in families with special-needs children and I’m not surprised. It requires both parents to be adults and shoulder responsibility. There is no place for blame, ignorance, childish behavior, selfishness, denial or rationalization. My husband and I have had our moments, but we each bring something to the table in her recovery and I think we’d both agree that we’re grateful we have the other person to do this with.
And, I was angry. Angry that I let the pediatrician talk me out of my concerns; that I let him make me feel like a fool; that I didn’t do something sooner. Angry that it was so hard to raise her, and I resented it being so hard, and I was angry and guilty for feeling that way and that I couldn’t just ‘get over it.’ Angry that I’d heard whisperings about the immunizations but never bothered to educate myself. …That the only way out was forward.
But here we are; and here I am, now, 18 months later: No more night wakings nightmares or night terrors. She’s potty trained, eats a balanced and varied diet, is conversant, writing, reading above grade level, loving, interacting, learning about feelings and empathy, curious and asking questions, and she’s being mainstreamed. Bit by bit I can see the real person emerge. Wow. What a remarkable and hard-won journey.
“While my life is not nearly as wacky and difficult as depicted in some stories about autism, there are days.
There are days when it seems like no one "gets it".
Like, trying to convince her Pediatrician that she really does have a problem and I am not an overly neurotic mother creating problems where there are none. That her screaming and panic at the sound of a vacuum is NOT an attempt to get my attention and that her self-limited diet is not because I haven’t offered her a dozen other foods a bazillion times.
Or, like trying to convince the County that she really does have processing issues. That she doesn't get it if I say, "Get dressed." but she understands when I say "Put your clothes on." That if you get her going on her own topic, she’s fine, but try to teach her something, and sometimes you just get a blank stare, drifting or screeching. And if you listen carefully, the tenses, pronouns and words are just plain wrong and out of order.
And, feeling like I have to always explain her behavior to well-meaning friends and neighbors. That she can’t just come over and play because I still have to ‘trail along on the sidelines.’ That her manic running around is just that. Manic. This is not an excited child running around playing WITH other children, she’s totally out of control and if I don’t keep a lid on it, she’ll give you quite a show when it’s time to leave."
[But, it wasn’t just about others not getting it…it was also about me, and the never-ending questioning, second-guessing and guilt that was my constant companion.]
"Not really knowing whether having friends is something she wants, likes, needs, misses or doesn’t care about.
Further isolating myself by bucking the overwhelming pressure to enroll my child in extra-curricular activities.
That having autism spectrum disorder: Pervasive Developmental Disorder/Aspergers, Anxiety, ADHD, Receptive/Expressive Language Disorder and Sensory Integration Disorder, doesn’t mean she isn’t cute, adorable, pretty or smart.
That even though I’m grateful my child is high functioning, I am still disappointed.
That no matter how much I confront the sadness and discomfort, and feel like I’m handling it and dealing with it, I am sidelined by an innocent event, observation or comment and feel like I have to grieve it all over again.
The guilt over knowing that if I’d done something sooner, we’d be that much further ahead.
Now that she is diagnosed gluten and casein intolerant, the needs of a special diet have added to the strain. It isn’t just as simple as going out when I’m tired and don’t want to cook. I still have to prep her meal.”
As I mentioned, by this date, she had been about 3 1/2 months into biomedical. It was frought with ups and downs and I was trying so hard to understand our ‘new’ child. So much information was coming at me all at once and I had no idea how I was going to keep track of it all and worse, I was very afraid I was going to make a mistake. I remember staying up until the early morning hours researching, trying to make sense of it all. I got over that hump, like I’ve gotten over many ‘humps’ after that.
Biomedical has given us our daughter back, but it has come at a price. A price certainly in monetary terms, as well as costly both physically and emotionally for me. As I like to say: “The apple hasn’t fallen far from the tree.” Meaning, like many parents of these children, I too suffer from body imbalance. And like many of the caretakers of these children, my health has taken a hit for the burden is great and I, too, have benefited from a variant of the DAN! protocol.
But health isn’t the only thing that takes a hit. Relationships do too. Whether married or partnered, the relationship is a dance. Adding a child, and special-needs one at that, takes things to a whole different dimension. If the relationship is on unsettled ground to begin with, there is little foundation to see it through when the demands of a special needs child comes barreling in. Add to that the differences of opinion when it comes to treatment, and it becomes a lighted fuse. Divorce rates are high in families with special-needs children and I’m not surprised. It requires both parents to be adults and shoulder responsibility. There is no place for blame, ignorance, childish behavior, selfishness, denial or rationalization. My husband and I have had our moments, but we each bring something to the table in her recovery and I think we’d both agree that we’re grateful we have the other person to do this with.
And, I was angry. Angry that I let the pediatrician talk me out of my concerns; that I let him make me feel like a fool; that I didn’t do something sooner. Angry that it was so hard to raise her, and I resented it being so hard, and I was angry and guilty for feeling that way and that I couldn’t just ‘get over it.’ Angry that I’d heard whisperings about the immunizations but never bothered to educate myself. …That the only way out was forward.
But here we are; and here I am, now, 18 months later: No more night wakings nightmares or night terrors. She’s potty trained, eats a balanced and varied diet, is conversant, writing, reading above grade level, loving, interacting, learning about feelings and empathy, curious and asking questions, and she’s being mainstreamed. Bit by bit I can see the real person emerge. Wow. What a remarkable and hard-won journey.
Subscribe to:
Posts (Atom)