I am that Mother. The mother of the child people pray they will not have. I think about that sometimes...
At times, I desperately grieve the child that died when Madelyn's autism was born. I have a daily reminder of the child that passed away. She continually slips through my fingers.
Other days are filled with routine and I live the life that is before me without pondering what could have been or what is, I just do.
Then there are precious moments (at times whole days) when Madelyn's purposeful presence in my life is clearer than anything else I know. I am reminded of my relationship with God. I always love and have faith in the Trinity. However, I do not always draw close to them. I do not always allow them to influence me. I believe my stubbornness is at least partly responsible for the people God has placed in my life. I have this daily reminder of how unlike Christ I am.
On those days when I allow myself to be changed by Madelyn, I feel a greater peace and understanding of love than I believe other people (without a Madelyn) can ever grasp. My salvation relies on Jesus but it is nonetheless forever intertwined in my relationship with my little girl.
I think we all have someone or something that we continually struggle with in our daily attempt to love like Jesus. We choose moment by moment whether we will act human or as God. To be human is to act through and depend upon God. To act as God is to do things of our own volition (control). I am thankful that God loves me enough to remind me daily that I am human. I pray that I will choose to see His reminder. For as I fully rely on His love, compassion, patience and wisdom...I am offered glimpses of a world turned upside down and I am not afraid.
Thursday, November 18, 2010
Saturday, August 28, 2010
Wednesday, August 25, 2010
Sensory Integration
Sensory Integration refers to how people use the information provided by all the sensations coming from within the body and from the external environment. We usually think of the senses as separate channels of information, but they actually work together to give us a reliable picture of the world and our place in it. Your senses integrate to form a complete understanding of who you are, where you are, and what is happening around you. Because your brain uses information about sights, sounds, textures, smells, tastes, and movement in an organized way, you assign meaning to your sensory experiences, and you know how to respond and behave accordingly.
I remember when Madelyn was 3 years old and we were on our way to Pennsylvania for my Grandparents 75th wedding anniversary. This entailed our first experience taking Madelyn on an airplane. Once we got in the airport, she screamed and pulled on me like her skin was on fire. This screaming did NOT stop. Bear in mind, this is pre-diagnosis and pre-sensory integration techniques...By the time we got on the plane, my head was pounding and my back had sharp pains radiating from bottom to top. My parents suggested mid-flight that I take a break in the front of the plane (it may have been the flight attendant seat because it was alone). I agreed and made my way to the seat. I sat down and went numb. I could hear Madelyn screaming in the distance. I remember feeling the tears roll down my face, but being disconnected from the full emotion of the situation. It was and is the worst experience in the history of my daughter and my relationship. I realized when we put her in her carseat in the car that she calmed down. This spurred the idea to keep her in the car seat as much as possible. In fact, on the return flight we carried her in the car seat through the airport. Imagine carrying a 3 year old in a car seat through a huge airport! We got creative and put her at the top of our luggage carrier as we sprinted through the terminal.
I look back on that experience in a different way now. I realize the reason my daughter was screaming like her skin was on fire, is because it was...her nervous system was so under-developed that all of the commotion, people, noises, smells, and luggage attacked her senses and she had no way to discern or make sense of what was happening. Not long after that trip Madelyn was diagnosed with a Pervasive Developmental Disorder and she began early intervention which included Sensory Integration. We were taught a brushing technique that helped to stimulate her nervous system releasing endorphins to counteract the constant flood of adrenaline in her system. Within two weeks of this treatment, Madelyn began eating different food textures and increased her tolerance of touch...and stopped screaming.
I wonder how this concept of sensory integration is reflected in my spiritual autism. I have more questions than answers. Do my senses create an accurate picture of the world? Do my senses create an accurate picture of God and what He is doing in the world? Can I surrender to the possibility that God loves my daughter more than me? Can I accept the sensory input that tells me to release my white-knuckle grip on my daughter and allow God to use her to help people learn what it is to be like Jesus? What sensory integration intervention do I need? I feel like I hide from the cure to my ailment. In my own way, I scream and kick as I insist upon total control of my life. The closest comparison I have to the brushing technique in my spiritual life is my attempts at practicing the discipline of solitude and sabbath. At first this "brushing" feels like added pressure, but after a significant amount of time, it releases peace that counteracts my anxiety. Time in surrender, alone with God never fails. I am filled with complete understanding of who I am, where I am, and what is happening around me.
When life gets busy with phone calls, emails, meetings, kids' homework, cooking, cleaning, social obligations, service obligations and family responsibilities...it can be hard to discern the whisper of God. Our minds can stay on full blast and miss the gentle rest that brings refreshment.
How long has it been since someone recognized you calm down in your "car seat"? How long has it been since you allowed God to "brush" through your hurt, your addiction, your grief, your control, your fear or your pride?
I remember when Madelyn was 3 years old and we were on our way to Pennsylvania for my Grandparents 75th wedding anniversary. This entailed our first experience taking Madelyn on an airplane. Once we got in the airport, she screamed and pulled on me like her skin was on fire. This screaming did NOT stop. Bear in mind, this is pre-diagnosis and pre-sensory integration techniques...By the time we got on the plane, my head was pounding and my back had sharp pains radiating from bottom to top. My parents suggested mid-flight that I take a break in the front of the plane (it may have been the flight attendant seat because it was alone). I agreed and made my way to the seat. I sat down and went numb. I could hear Madelyn screaming in the distance. I remember feeling the tears roll down my face, but being disconnected from the full emotion of the situation. It was and is the worst experience in the history of my daughter and my relationship. I realized when we put her in her carseat in the car that she calmed down. This spurred the idea to keep her in the car seat as much as possible. In fact, on the return flight we carried her in the car seat through the airport. Imagine carrying a 3 year old in a car seat through a huge airport! We got creative and put her at the top of our luggage carrier as we sprinted through the terminal.
I look back on that experience in a different way now. I realize the reason my daughter was screaming like her skin was on fire, is because it was...her nervous system was so under-developed that all of the commotion, people, noises, smells, and luggage attacked her senses and she had no way to discern or make sense of what was happening. Not long after that trip Madelyn was diagnosed with a Pervasive Developmental Disorder and she began early intervention which included Sensory Integration. We were taught a brushing technique that helped to stimulate her nervous system releasing endorphins to counteract the constant flood of adrenaline in her system. Within two weeks of this treatment, Madelyn began eating different food textures and increased her tolerance of touch...and stopped screaming.
I wonder how this concept of sensory integration is reflected in my spiritual autism. I have more questions than answers. Do my senses create an accurate picture of the world? Do my senses create an accurate picture of God and what He is doing in the world? Can I surrender to the possibility that God loves my daughter more than me? Can I accept the sensory input that tells me to release my white-knuckle grip on my daughter and allow God to use her to help people learn what it is to be like Jesus? What sensory integration intervention do I need? I feel like I hide from the cure to my ailment. In my own way, I scream and kick as I insist upon total control of my life. The closest comparison I have to the brushing technique in my spiritual life is my attempts at practicing the discipline of solitude and sabbath. At first this "brushing" feels like added pressure, but after a significant amount of time, it releases peace that counteracts my anxiety. Time in surrender, alone with God never fails. I am filled with complete understanding of who I am, where I am, and what is happening around me.
When life gets busy with phone calls, emails, meetings, kids' homework, cooking, cleaning, social obligations, service obligations and family responsibilities...it can be hard to discern the whisper of God. Our minds can stay on full blast and miss the gentle rest that brings refreshment.
How long has it been since someone recognized you calm down in your "car seat"? How long has it been since you allowed God to "brush" through your hurt, your addiction, your grief, your control, your fear or your pride?
Wednesday, August 18, 2010
Etiology
I do not know what causes autism. I have a theory. I think some individuals, for whatever reason, are predisposed to the disorder and that environmental factors act as triggers that “turn on” the disorder and “turn off” developmental progress. I wonder if different individuals have different environmental triggers that then produce various deficiencies, etc. It all seems like such a mystery to me. When Madelyn was born, she was the most beautiful baby. I could look at her all day. Inside, however, as her nervous system developed and her information receivers were being built, not all the wiring connected to its proper place. I think of putting together furniture from IKEA and getting to the end with several extra nuts, bolts and random pieces…the bed looks right from the outside, so you cast off the extras. Then, later that night after you wind up on the floor, you’re digging through the trash hoping you can figure out where those pieces go. You want to fix it. You do not want to sleep on the floor; you want the bed you thought you brought home. I digress. I hope you caught all the subtle or not so subtle nuances of my metaphor.
While Madelyn was a beautiful infant to look at, she was not very fond of cuddling close and did not tolerate any breast-feeding positions. The closer I would hold her, the louder she would scream. I remember sobbing, wondering why I couldn’t figure out how to calm her and feed her. Madelyn taught me that I could hold her at a distance and she was especially fond of lying in my lap. When she was asleep I would hold her closer, stroke her face, smell her skin and soak in her presence and attempt to fully embrace her, showing her love in a way she couldn’t accept while awake.
I think about growing up and transitioning into different life stages. I was born, predisposed perhaps, to certain temptations or pitfalls and environmental factors acted as triggers that “turned on” my spiritual autism. I think of the years that God must have been trying to pull me close while I screamed. I wonder if He held me and embraced me as I slept.
I don’t think I met the full criteria for spiritual autism until I was 14 or 15 years old. From 15 years old until I was about 31 years old, I lived with an undiagnosed spiritual pervasive developmental disorder, which I now call Spiritual Autism. I am still Spiritually Autistic. However, my daughter is teaching me spiritual life skills, like love, forgiveness, acceptance and dependence.
I pray that today I will remember to use my spiritual life skills.
While Madelyn was a beautiful infant to look at, she was not very fond of cuddling close and did not tolerate any breast-feeding positions. The closer I would hold her, the louder she would scream. I remember sobbing, wondering why I couldn’t figure out how to calm her and feed her. Madelyn taught me that I could hold her at a distance and she was especially fond of lying in my lap. When she was asleep I would hold her closer, stroke her face, smell her skin and soak in her presence and attempt to fully embrace her, showing her love in a way she couldn’t accept while awake.
I think about growing up and transitioning into different life stages. I was born, predisposed perhaps, to certain temptations or pitfalls and environmental factors acted as triggers that “turned on” my spiritual autism. I think of the years that God must have been trying to pull me close while I screamed. I wonder if He held me and embraced me as I slept.
I don’t think I met the full criteria for spiritual autism until I was 14 or 15 years old. From 15 years old until I was about 31 years old, I lived with an undiagnosed spiritual pervasive developmental disorder, which I now call Spiritual Autism. I am still Spiritually Autistic. However, my daughter is teaching me spiritual life skills, like love, forgiveness, acceptance and dependence.
I pray that today I will remember to use my spiritual life skills.
Tuesday, August 17, 2010
On being Spiritually Autistic
I posted the diagnostic criteria for autism because I think it is crucial in understanding my self-diagnosis. It has become clear to me over the last 13 years that my daughter is a reflection of my own autism. This is not to say she is autistic because of me. This is to say her journey parallels my spiritual journey. I am better able to understand her struggle when I look at my spiritual life. I assure you I meet the full criteria for autism as it relates to my spiritual development and transformation. I pray to be as patient and loving a parent to my daughter, as God is to me. My hope is to chronicle lessons revealed to me in this journey. I challenge you to apply the developmental delays, social difficulties, repetitive behaviors and overall struggle to express and accept relationship, to your own life and specifically, to your relationship with God.
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