We just got back a few minutes ago from an appointment with Princess #2's new neurologist and I'm floored. She's so much more than what we've been dealing with in a doctor for the past few years that I didn't even know what we were missing. She also has a specialty in Autism Spectrum Disorders and Behavioral Disorders that I wasn't aware of when I first made our appointment with her. This woman is just amazing and I feel like she landed in our lap. Princess #2 loves her already which in itself is amazing, especially since this doctor is very no-nonsense. It often takes Princess #2 quite some time, if not a couple of visits, to warm up to someone. She even did her best to make eye contact with the doctor when the doctor requested it, but that was agonizing for Princess #2. Eye contact is such a struggle and so uncomfortable for her, even when she's not thinking about it.
Dr. K is already going to take control of Princess #2's seizure disorder and we'll be getting blood tests to check the levels of Lamictal in her blood to make sure it's appropriate and therapeutic. Even better or just as good Dr. K is going to be very, very hands on with our behavioral issues, sensory issues, and social issues. Dr. K already wrote a prescription for Princess #2 to get occupational therapy at our local autism therapeutic center and she said that she can guarantee Princess #2 a spot there because she consults at that school/clinic.
Dr. K already made another appointment for the 22nd, and said that she's not only sending Princess #2 for special therapies but she's going to do therapies herself in her office. We won't need the Developmental-Behavioral Pediatrician that we've been on the waiting list for. That we've been waiting literally years to see. It's like we have this amazing new all-in-one doctor and she's willing to do it all with us, not only willing but stepped up and offered. When Dr. K asked what I had in place for Princess #2 outside of school and I told her we were on a waiting list for a Developmental-Behavioral Pediatrician to help us with the sensory stuff and behavioral stuff, Dr. K's response was, "Why would you do that? You don't have to keep waiting. You have me. I can help you with all of this. Not just refer you, but actually do this myself one on one with Princess #2."
What in the HUH??? Is this woman for real? Is it already Christmas? Did Santa come early? Was there an angel sitting next to me this morning? Did God answer a prayer for me so directly and so precisely "to order" that if I were to call it a coincidence lightning would strike me?
She's going to be hands on and in frequent contact with our school. She wants to know literally everything about Princess #2 academically, she wants current and past IEPs, she wants progress reports from the teachers before each and every appointment that we have.
And for the part that made my heart sink. She's going to evaluate Princess #2 herself, which in and of itself is not bad. Nor did it make my heart sink. I wish our last neurologist had done this, as our child psychiatrist had done in obtaining the diagnosis of PDD-NOS "with the likelihood of Asperger's Disorder." But Dr. K believes that Princess #2 doesn't have Asperger's Disorder. Dr. K concurs that Princess #2 should have had the PDD diagnosis, that she undoubtedly has ASD but she has more developmental and sensory issues apparent even just during our meeting today that people with Asperger's Disorder don't typically have, and if they do not to the extent that Princess #2 does.
A new way of thinking, even though when the new DSM comes out it "won't matter" since "autism will be autism no matter what type it is." In my head there are a lot of complications to this anyway that I can't really express, but they're there. How do I digest all of this? Do I relearn what I know or think I know? Do I stop researching so much about Asperger's Disorder? What type of Autism, other than "typical" do I put my energy into researching? We'll have more answers after her next couple of appointments but now it feels like we've backtracked even though we're probably actually making headway that I didn't even realize we needed to make. I've felt like I've been treading water, nearly drowning and in over my head, not knowing where the life raft is. Maybe this explains why. We were close to the right diagnosis but not quite there... the peg just needed to be shifted slightly. Just how much it needs to be shifted won't be clear for a little while, but there are answers and help to be had and it's not just in spitting distance. It's finally HERE.
Showing posts with label PDD-NOS. Show all posts
Showing posts with label PDD-NOS. Show all posts
Wednesday, December 08, 2010
Monday, November 22, 2010
Inner Conflict Resolution
My middle daughter turns 8 years old in just a few days. She's in second grade, and it's a been quite a journey for her to get there. Every year she's progressed further than she did the year before. Every year, she has new challenges. She has Asperger's Disorder, as I've discussed at length before. This is a form of Autism.
But this post isn't really about her this time. I'm proud of my daughter. I love her with all of my heart. But that doesn't mean that I don't get frustrated with her, or that I don't get angry with her. Yes, with her. Because sometimes her behavior is age-appropriate and situationally appropriate. Sometimes there are even misleading moments and periods of downright averageness. Our house has it's own normal, probably different than your normal, so I try to refrain from using "typically normal" except when referring to what is "typically normal" for my own children specifically.
For a long time, friends and family have described how I'm handling Princess #2 with various descriptors. Strong. Bravely. Well. Loving. Caring. Gently. Patiently. Courageously. Inspirational. A great advocate. Self educated. Encouraging. Helpful. Understanding. Open-minded. Firm. So many positive words, so many more than I can think of now. My best friend gave me a wonderful compliment the other day, saying that of all of us in our group of friends, the one of us who has handled motherhood the best and therefore would be the best mother for a special needs daughter would have to be me. Considering I try to model my mothering after her, and that I believe she's the best mother I know, I took that as a great and undeserved compliment.
But what people don't seem to see or maybe refuse to acknowledge are the other adjectives that can be used to describe me as a mother to a child with special needs. Sometimes sad. Tired. Swimming. In over my head. Unprepared. Afraid. Worried. Anxious.
Angry. I've been living through it since her diagnosis, and not allowing myself to acknowledge that emotion, but I've been angry that it happened to my daughter and by extension to my dearest heart. Autism has happened to our family. Everything that Autism makes more difficult, more pronounced, more MORE, has happened to my family. And I've been asking, without acknowledging that angry question, why?
And why haven't I been able... or feeling like I'm allowed... to acknowledge those negative adjectives and feelings? Why does the world expect parents with special needs children to put on a special happy face? We can't admit to anyone who isn't actually living it that some days, we're just plodding through, that we're just existing and faking it simply to get through the day until the day is over. That our patience isn't infinite, that we don't always like our kids as much as we love them, and that we don't always know what to do.
I didn't even realize until recently that I had that Why stuck in my head. But it's been there. It's been persistent. In fact, it's been the driving force behind my anger. I didn't plan to have a child with special needs. When she was small and we weren't sure what was going on and it was before we had even an inkling that she was special needs I distinctly remember saying a brief prayer, "Please God, let this be something we can fix with her diet or medicine. Don't let her have Autism." I think maybe I knew even then before I really even knew what Autism was and that there were different types and severities. I didn't even know why the word Autism flitted through my head in that prayer and I remember that it surprised me that my brain jumped to it. At the time I had no clue. I just had no clue. I wonder if God answered my own prayer as I was praying it. That thought has crossed my mind more than once.
I quickly reached a point where I desired answers more than I desired "don't let her have Autism."
Of course I never once wanted her to have Autism. Her diagnosis was devastating even though it gave us answers, and even though it gave us a starting place and a map on how to proceed. It opened doors for us with her education in getting her a proper PPT and IEP. But it also opened doors for feelings I didn't expect.
I'm not angry with her for having Autism. It's not her fault. None of it is her fault. I parent her as I do my other children keeping in mind her strengths and her needs, disciplining her as best as fits her personality and the situations. I give her as much love as she ever needs and encourage her to learn and laugh. Life isn't easy for her to navigate so there are many times that she's not happy. There are many things that are difficult for her to grasp that seem easy for other children her age and younger, that when she realizes it make her sad. She knows she's different and sometimes that makes her sad or angry while other times it doesn't bother her at all. She knows that either way she's loved and she's special. She's learning the language of Autism so that she can ask for things that she needs when she needs them, and that makes me happy that she understands and is figuring those things out, but it's made me angry that she HAS TO.
And all of this leads me to ask WHY? Why her? Why us? WHY ME? Why me and my child? Why would God do this to us? Why would he allow it? These are questions I haven't allowed myself to vocalize or even acknowledge but have been there in the back of my mind unformed nevertheless. And I know that I haven't been to Church as much as I should since we received this diagnosis because I've felt betrayed by that prayer. That prayer was the turning point, even before I heard the words, "Your daughter has Asperger's Disorder. Yes, it is Autism. She has PDD-NOS. Your suspicions were correct and the evaluation shows this is an accurate diagnosis"
Now there's a conflict that I'm having a lot of trouble with right now. I had a spiritual purging over the weekend at an event called Women of Faith. It was amazing. I've never had a questioning of God during all of these years. If anything, my faith has grown stronger. It's been my anger getting in the way, my disappointment getting in the way, of properly worshiping even though I pray for help and pray for thanks. My heart hasn't been in it quite the same way. At this convention, I was forced to acknowledge this entire mishmash of thoughts and emotions in a short period of time and kept coming back to WHY?
And then near the end of the second day, the answer came from one of the inspirational speakers, answering the question I'd finally put a voice to in my own head the night before while listening to their music and their stories. WHY? and then... Why not?
Why not indeed. My daughter is still my daughter. I love her. I'm proud of every accomplishment she makes because I know how difficult they can be for her. I take pride in the things that she finds easy. I take pride in her talents. She's smart, she's beautiful, she's funny, she's sensitive. We need each other. She wouldn't be who she is without the Autism, and I wouldn't be who I am now without her. So why not her and why not me? Maybe there are some lessons in there I should be looking at more closely, and maybe even being thankful for.
But this post isn't really about her this time. I'm proud of my daughter. I love her with all of my heart. But that doesn't mean that I don't get frustrated with her, or that I don't get angry with her. Yes, with her. Because sometimes her behavior is age-appropriate and situationally appropriate. Sometimes there are even misleading moments and periods of downright averageness. Our house has it's own normal, probably different than your normal, so I try to refrain from using "typically normal" except when referring to what is "typically normal" for my own children specifically.
For a long time, friends and family have described how I'm handling Princess #2 with various descriptors. Strong. Bravely. Well. Loving. Caring. Gently. Patiently. Courageously. Inspirational. A great advocate. Self educated. Encouraging. Helpful. Understanding. Open-minded. Firm. So many positive words, so many more than I can think of now. My best friend gave me a wonderful compliment the other day, saying that of all of us in our group of friends, the one of us who has handled motherhood the best and therefore would be the best mother for a special needs daughter would have to be me. Considering I try to model my mothering after her, and that I believe she's the best mother I know, I took that as a great and undeserved compliment.
But what people don't seem to see or maybe refuse to acknowledge are the other adjectives that can be used to describe me as a mother to a child with special needs. Sometimes sad. Tired. Swimming. In over my head. Unprepared. Afraid. Worried. Anxious.
Angry. I've been living through it since her diagnosis, and not allowing myself to acknowledge that emotion, but I've been angry that it happened to my daughter and by extension to my dearest heart. Autism has happened to our family. Everything that Autism makes more difficult, more pronounced, more MORE, has happened to my family. And I've been asking, without acknowledging that angry question, why?
And why haven't I been able... or feeling like I'm allowed... to acknowledge those negative adjectives and feelings? Why does the world expect parents with special needs children to put on a special happy face? We can't admit to anyone who isn't actually living it that some days, we're just plodding through, that we're just existing and faking it simply to get through the day until the day is over. That our patience isn't infinite, that we don't always like our kids as much as we love them, and that we don't always know what to do.
I didn't even realize until recently that I had that Why stuck in my head. But it's been there. It's been persistent. In fact, it's been the driving force behind my anger. I didn't plan to have a child with special needs. When she was small and we weren't sure what was going on and it was before we had even an inkling that she was special needs I distinctly remember saying a brief prayer, "Please God, let this be something we can fix with her diet or medicine. Don't let her have Autism." I think maybe I knew even then before I really even knew what Autism was and that there were different types and severities. I didn't even know why the word Autism flitted through my head in that prayer and I remember that it surprised me that my brain jumped to it. At the time I had no clue. I just had no clue. I wonder if God answered my own prayer as I was praying it. That thought has crossed my mind more than once.
I quickly reached a point where I desired answers more than I desired "don't let her have Autism."
Of course I never once wanted her to have Autism. Her diagnosis was devastating even though it gave us answers, and even though it gave us a starting place and a map on how to proceed. It opened doors for us with her education in getting her a proper PPT and IEP. But it also opened doors for feelings I didn't expect.
I'm not angry with her for having Autism. It's not her fault. None of it is her fault. I parent her as I do my other children keeping in mind her strengths and her needs, disciplining her as best as fits her personality and the situations. I give her as much love as she ever needs and encourage her to learn and laugh. Life isn't easy for her to navigate so there are many times that she's not happy. There are many things that are difficult for her to grasp that seem easy for other children her age and younger, that when she realizes it make her sad. She knows she's different and sometimes that makes her sad or angry while other times it doesn't bother her at all. She knows that either way she's loved and she's special. She's learning the language of Autism so that she can ask for things that she needs when she needs them, and that makes me happy that she understands and is figuring those things out, but it's made me angry that she HAS TO.
And all of this leads me to ask WHY? Why her? Why us? WHY ME? Why me and my child? Why would God do this to us? Why would he allow it? These are questions I haven't allowed myself to vocalize or even acknowledge but have been there in the back of my mind unformed nevertheless. And I know that I haven't been to Church as much as I should since we received this diagnosis because I've felt betrayed by that prayer. That prayer was the turning point, even before I heard the words, "Your daughter has Asperger's Disorder. Yes, it is Autism. She has PDD-NOS. Your suspicions were correct and the evaluation shows this is an accurate diagnosis"
Now there's a conflict that I'm having a lot of trouble with right now. I had a spiritual purging over the weekend at an event called Women of Faith. It was amazing. I've never had a questioning of God during all of these years. If anything, my faith has grown stronger. It's been my anger getting in the way, my disappointment getting in the way, of properly worshiping even though I pray for help and pray for thanks. My heart hasn't been in it quite the same way. At this convention, I was forced to acknowledge this entire mishmash of thoughts and emotions in a short period of time and kept coming back to WHY?
And then near the end of the second day, the answer came from one of the inspirational speakers, answering the question I'd finally put a voice to in my own head the night before while listening to their music and their stories. WHY? and then... Why not?
Why not indeed. My daughter is still my daughter. I love her. I'm proud of every accomplishment she makes because I know how difficult they can be for her. I take pride in the things that she finds easy. I take pride in her talents. She's smart, she's beautiful, she's funny, she's sensitive. We need each other. She wouldn't be who she is without the Autism, and I wouldn't be who I am now without her. So why not her and why not me? Maybe there are some lessons in there I should be looking at more closely, and maybe even being thankful for.
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