A New Chapter of Life
Life has many chapters. When you look back on your life, naturally you have the ability to divide it into times or chapters of your life, such as I can remember things from when I lived in my first apartment as a chapter of my life, when I was in high school in FL as a chapter, high school in AZ as a chapter and will even look at the divide between my junior and senior year, the time while I worked at particular jobs as different chapters and even the times of when I had each of my children and the life events as different chapters.... Some chapters we miss and want to reread or as the life changes occur we resist the transition into the newer chapters...
The last week or two, I have come to view as the ending of one chapter and slow beginning of a new chapter. I have also have come to terms with this change in my life story despite of how terrified I am of the unanswerable questions that lay ahead.
As I have mentioned before, my son was diagnosed with "at risk for Autism" at the age of 2 years old. At the time his doctor had told us that off the record, he was Autistic but she gave us the option to put on record our choice of Autism or "at risk for Autism". She also told us that he could qualify for early intervention services up to the age of 6 with the diagnosis of "at risk" on record but would need the official diagnosis of Autism at the age of 6 to continue services if need be. Like many parents who worry about labeling their child and trying to be optimistic that our son would end up like those cases you read about where after all of the intervention and therapies, no one would be able to tell that they had any sort of issue, we opted to have on record the "at risk for Autism". If, when the time came, he still needed help, we would then get the official diagnosis done.
At this same time my son was diagnosed with Expressive Language Disorder causing his speech delay and genetic abnormalities, which we found out after being referred to a geneticist (he has 30,000 extra bases point on his 13 chromosome and it apparently was passed down via the Y chromosome from my husband and the testing is so new that there isn't any information to tell us if this is the cause of things, something else or even something that would benefit him....just that he has it).
Mikey wasn't talking and the few words he once had spoken, disappeared and he could no longer say them. The way he tantrum-ed was different from other children and as we researched, we realized they weren't tantrums but meltdowns. He could even become violent. His senses were different too as he seemed to feed energy off of others in an over sensitive way than other children causing him to get riled up WAY more easily. He also seemed to lack sensitivity to pain and he couldn't read expressions or acknowledge when someone was upset or mad or sad versus when they were happy. He didn't even play like most children as he would line up his cars or build with his blocks in a color system; he didn't even play with other children but more of just beside them. He couldn't make eye contact 90-95% of the time and often seemed lost in his own world. He had issues with getting dirty/messy when eating and even though he didn't have to have every day be completely routine, his personal little routines had to be precisely the same each time from getting shoes on, pouring his drink into his cup, putting his jacket on a specific way, etc... or a meltdown would ensue and once the first meltdown occurred the rest of the day would be filled with meltdowns. Every day became a struggle of making sure nothing in his little routines went wrong and trying to stay a few steps ahead of meltdowns while trying to understand why he couldn't talk and what we as parents could do to help him as well as to do the basic essentials of taking care of him around the fits (for example brushing his teeth could become a violent battle where both my husband and I had to work together to brush his teeth and I could easily walk away with a busted lip given to me by my son). We were recommended to different specialists for tests we didn't always understand the purpose of and told to get him into programs we had never heard of to do therapies that we didn't quite understand what the goals were for. We filled out questionnaire after questionnaire, some as thick as a small magazine with questions that seemed to be very repetitive and about things we have never even thought to notice....
At the beginning it was just chaotic between appointments and learning about who and what the specialists were and did- at one point I remember making notes next to appointments of who the people were and what they did to the best of my understanding. Once it got going we eventually got the hang of juggling the appointments and therapy sessions and figuring out who was linked to who and with what office/agency, etc... Eventually we too became unlicensed therapists & specialists ourselves from the mountains of research we did and working with him once his actual therapists left, making sure that we continued their work so that he got the most help as possible. We tried any and almost all things that parents in the same boat and specialist recommend we would try. It affected our parenting methods, the food we ate, even the toys we bought and furnishings in our home. We looked at furniture and toys that would help with his fine motor, things to allow him to find sensory input and to promote speech.
We were blessed to have the therapists we did as they truly seemed to care about our son and want what was best for him. They even helped us in discovering why our son was injuring himself which led to a diagnosis of Tourette's Syndrome as well.
I remember driving home from the specialist appointment after he was given the "at risk for Autism" diagnosis and stopping at the red light on 44th Street and Thomas Rd and starting to cry.... I was relieved we had an answer to why this was all happening, an official answer confirming what my husband and I already suspected after the weeks worth of hours we researched and always coming to the same conclusions. But also because it confirmed those conclusions, confirming that we were robbed of a "normal child" and all of the questions that lay ahead unanswered and unable to be answered. I cried so many times since then as well, especially when we experienced a set back or regression or someone who didn't understand our situation made a comment as if they understood and we were just doing things wrong or that our child was stupid. I cried from anger for being robbed of a "normal" child and that my son was robbed of being a "normal" child and that I had not been able to do anything to prevent this. I worried about him ever being able to have a conversation with someone or even being able to make and actual friend. I worried he would always be in diapers and not be able to participate in school activities and classes the same way as other children. I worried that he would grow up and never be able to live on his own or drive a car or start a family of his own.... I had nightmares he would be like those adults with autism that I heard about in the news who were fatally shot by police who didn't realize that they weren't raising their hands and conforming to orders because they didn't know how to follow the directions or that he would be taken advantage of because he didn't understand.... These were the unanswerable questions I had....
My son will be turning 6 in a few months and he still does not have an official diagnosis of Autism. And I know he would not be getting one as he will not qualify for it. All of his therapists seem to agree too. This means that he will loose his services. He will go from doing 14-37 hours of therapy a week to doing none. It is terrifying and yet exciting. I still worry that he could regress and still worry about his future. I no longer will have the back up and extra help as I have majority of his life now. But.....
In the last 4 years, my son has learned to use the potty, how to dress and undress himself, brush his own teeth, eat without fear of little messes, shower, can put on and take off his own shoes and socks and just put on his jacket without insisting it be zipped and hood up. HE CAN TALK! He has graduated out of his preschool class and was exited out of his Individualized Education Plan (IEP). He was even tested in kindergarten a year early and not a special kindergarten class but with "normal" peers and is excelling in all subjects as one of the top students in his class, even receiving Academic Achievement Award. He plays WITH other children and even has a best friend he made all on his own who he has done sleepovers with. Things that I questioned 4 years ago if they were even possible...
So I go now, looking into the upcoming new chapter with hope and faith that things will be okay. Content with the fact that I cannot answer those unanswerable questions and knowing that I can handle what comes next as it happens. We will always have the possibility of a meltdown due to his OCD tendencies or anxiety but I do not let this concern me like it use to with how far he has come. His Tourette's will also be part of his life but I feel we will be able to handle that after all that he has over come. With knowing all of the hurdles he has already over come I have no doubt we can overcome anything else that comes in the future. Here's looking towards a new chapter.
The last week or two, I have come to view as the ending of one chapter and slow beginning of a new chapter. I have also have come to terms with this change in my life story despite of how terrified I am of the unanswerable questions that lay ahead.
As I have mentioned before, my son was diagnosed with "at risk for Autism" at the age of 2 years old. At the time his doctor had told us that off the record, he was Autistic but she gave us the option to put on record our choice of Autism or "at risk for Autism". She also told us that he could qualify for early intervention services up to the age of 6 with the diagnosis of "at risk" on record but would need the official diagnosis of Autism at the age of 6 to continue services if need be. Like many parents who worry about labeling their child and trying to be optimistic that our son would end up like those cases you read about where after all of the intervention and therapies, no one would be able to tell that they had any sort of issue, we opted to have on record the "at risk for Autism". If, when the time came, he still needed help, we would then get the official diagnosis done.
At this same time my son was diagnosed with Expressive Language Disorder causing his speech delay and genetic abnormalities, which we found out after being referred to a geneticist (he has 30,000 extra bases point on his 13 chromosome and it apparently was passed down via the Y chromosome from my husband and the testing is so new that there isn't any information to tell us if this is the cause of things, something else or even something that would benefit him....just that he has it).
Mikey wasn't talking and the few words he once had spoken, disappeared and he could no longer say them. The way he tantrum-ed was different from other children and as we researched, we realized they weren't tantrums but meltdowns. He could even become violent. His senses were different too as he seemed to feed energy off of others in an over sensitive way than other children causing him to get riled up WAY more easily. He also seemed to lack sensitivity to pain and he couldn't read expressions or acknowledge when someone was upset or mad or sad versus when they were happy. He didn't even play like most children as he would line up his cars or build with his blocks in a color system; he didn't even play with other children but more of just beside them. He couldn't make eye contact 90-95% of the time and often seemed lost in his own world. He had issues with getting dirty/messy when eating and even though he didn't have to have every day be completely routine, his personal little routines had to be precisely the same each time from getting shoes on, pouring his drink into his cup, putting his jacket on a specific way, etc... or a meltdown would ensue and once the first meltdown occurred the rest of the day would be filled with meltdowns. Every day became a struggle of making sure nothing in his little routines went wrong and trying to stay a few steps ahead of meltdowns while trying to understand why he couldn't talk and what we as parents could do to help him as well as to do the basic essentials of taking care of him around the fits (for example brushing his teeth could become a violent battle where both my husband and I had to work together to brush his teeth and I could easily walk away with a busted lip given to me by my son). We were recommended to different specialists for tests we didn't always understand the purpose of and told to get him into programs we had never heard of to do therapies that we didn't quite understand what the goals were for. We filled out questionnaire after questionnaire, some as thick as a small magazine with questions that seemed to be very repetitive and about things we have never even thought to notice....
At the beginning it was just chaotic between appointments and learning about who and what the specialists were and did- at one point I remember making notes next to appointments of who the people were and what they did to the best of my understanding. Once it got going we eventually got the hang of juggling the appointments and therapy sessions and figuring out who was linked to who and with what office/agency, etc... Eventually we too became unlicensed therapists & specialists ourselves from the mountains of research we did and working with him once his actual therapists left, making sure that we continued their work so that he got the most help as possible. We tried any and almost all things that parents in the same boat and specialist recommend we would try. It affected our parenting methods, the food we ate, even the toys we bought and furnishings in our home. We looked at furniture and toys that would help with his fine motor, things to allow him to find sensory input and to promote speech.
We were blessed to have the therapists we did as they truly seemed to care about our son and want what was best for him. They even helped us in discovering why our son was injuring himself which led to a diagnosis of Tourette's Syndrome as well.
I remember driving home from the specialist appointment after he was given the "at risk for Autism" diagnosis and stopping at the red light on 44th Street and Thomas Rd and starting to cry.... I was relieved we had an answer to why this was all happening, an official answer confirming what my husband and I already suspected after the weeks worth of hours we researched and always coming to the same conclusions. But also because it confirmed those conclusions, confirming that we were robbed of a "normal child" and all of the questions that lay ahead unanswered and unable to be answered. I cried so many times since then as well, especially when we experienced a set back or regression or someone who didn't understand our situation made a comment as if they understood and we were just doing things wrong or that our child was stupid. I cried from anger for being robbed of a "normal" child and that my son was robbed of being a "normal" child and that I had not been able to do anything to prevent this. I worried about him ever being able to have a conversation with someone or even being able to make and actual friend. I worried he would always be in diapers and not be able to participate in school activities and classes the same way as other children. I worried that he would grow up and never be able to live on his own or drive a car or start a family of his own.... I had nightmares he would be like those adults with autism that I heard about in the news who were fatally shot by police who didn't realize that they weren't raising their hands and conforming to orders because they didn't know how to follow the directions or that he would be taken advantage of because he didn't understand.... These were the unanswerable questions I had....
My son will be turning 6 in a few months and he still does not have an official diagnosis of Autism. And I know he would not be getting one as he will not qualify for it. All of his therapists seem to agree too. This means that he will loose his services. He will go from doing 14-37 hours of therapy a week to doing none. It is terrifying and yet exciting. I still worry that he could regress and still worry about his future. I no longer will have the back up and extra help as I have majority of his life now. But.....
In the last 4 years, my son has learned to use the potty, how to dress and undress himself, brush his own teeth, eat without fear of little messes, shower, can put on and take off his own shoes and socks and just put on his jacket without insisting it be zipped and hood up. HE CAN TALK! He has graduated out of his preschool class and was exited out of his Individualized Education Plan (IEP). He was even tested in kindergarten a year early and not a special kindergarten class but with "normal" peers and is excelling in all subjects as one of the top students in his class, even receiving Academic Achievement Award. He plays WITH other children and even has a best friend he made all on his own who he has done sleepovers with. Things that I questioned 4 years ago if they were even possible...
So I go now, looking into the upcoming new chapter with hope and faith that things will be okay. Content with the fact that I cannot answer those unanswerable questions and knowing that I can handle what comes next as it happens. We will always have the possibility of a meltdown due to his OCD tendencies or anxiety but I do not let this concern me like it use to with how far he has come. His Tourette's will also be part of his life but I feel we will be able to handle that after all that he has over come. With knowing all of the hurdles he has already over come I have no doubt we can overcome anything else that comes in the future. Here's looking towards a new chapter.
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