Showing posts with label PDD-NOS. Show all posts
Showing posts with label PDD-NOS. Show all posts
Sunday, October 19, 2014
Happy 10th Birthday
Happy 10th Birthday to my sweet little pepper, Joey! My toughest boss, my most important teacher, my constant companion, and the reason I live this life. I wished for you for so long before I was blessed with you and that's the reason I get so emotional as the time seems to be flying by. Double digits...you're really not my baby anymore. I am so proud of the young man you are becoming. We've been through a lot, me and you. I can't promise that the journey will always be easy...it's been really hard at times...but I can guarantee that I will always be by your side, as long as I am on this earth. "You are the best thing that's ever been mine." I love you! (And yes, I make him read this).
Thursday, September 11, 2014
6 years ago today
It's hard to believe that 6 years ago today, my sweet little pepper was diagnosed with ASD. What a journey we have been on together. Sometimes, it's hard to look back on how far we've come. As much as I want to relive his time as a baby, there are certain moments, days, even months that I would rather skip. The very talkative young man that stands as high as my shoulder now, used to be a quiet, frustrated, little boy, living in a world I wasn't allowed to be a part of. The boy who runs to hug me used to never want to be touched. I am lucky that he is present in our lives and enjoying so many things kids his age enjoy. My littlest soul mate has taught me the biggest life lessons. And I am forever grateful. #tbt September 2008
Saturday, May 3, 2014
Reading Success
On April 24th, I had Joey's annual IEP meeting. I was nervous, but with so much other stuff going on in my life, I felt like it was going to be another letdown. Usually the meetings start with how poorly Joey pays attention, how he can't focus, how he is behind grade level, etc.
Well I was in for quite a surprise.
Some parents would be upset to hear the word "average" be used to describe their child, but other parents would feel it was a dream come true. Today, I was told that Joey is "an average reader on a 3rd grade level." I wanted to cry tears of joy. He entered 3rd grade at a 1st grade reading level.
Miracles happen! Yes, I feel it's a miracle. Not only has he progressed, but his team, who weren't his biggest supporters, actually had positive things to say.
Of course Joey's response was, "Can I quit Kumon now?"
Speaking of Kumon, he received a Rising Star medal this week for being on grade level.
I am so proud of my boy!
Well I was in for quite a surprise.
Some parents would be upset to hear the word "average" be used to describe their child, but other parents would feel it was a dream come true. Today, I was told that Joey is "an average reader on a 3rd grade level." I wanted to cry tears of joy. He entered 3rd grade at a 1st grade reading level.
Miracles happen! Yes, I feel it's a miracle. Not only has he progressed, but his team, who weren't his biggest supporters, actually had positive things to say.
Of course Joey's response was, "Can I quit Kumon now?"
Speaking of Kumon, he received a Rising Star medal this week for being on grade level.
I am so proud of my boy!
Wednesday, April 2, 2014
CNN iReport for Autism Awareness Day 2014: Reflection and Hope
One of the things I like the least is talking in front of others, let alone record myself speaking in front of others (and I really dislike the frozen shot of my crazy face). But his story needs to be told.
Today, I celebrate all the families who work tirelessly everyday to make their children's lives better. I also celebrate all of the therapists who work tirelessly to teach children the skills they need to adapt to the crazy world around them. But most of all, I celebrate my sweet boy, who challenged me in a way I never imagined and helped ignite the fire in me to help others. I love you, Joey!
Here is the link: http://ireport.cnn.com/docs/DOC-1115749
My son hit all his physical milestones at the suggested age but he was quiet. Painfully quiet. At 18 months old, he was able to say less than 20 words. By 2 years old, his words were gone.
We started speech therapy right around his 2nd birthday and implemented a Picture Exchange Communication System. Around 2 1/2, he started to imitate us! Shortly after, I participated in a Jump Start program through a Phoenix-based organization and I learned how to work with my son by implementing a home program based on the principles of Applied Behavior Analysis (ABA).
My son continued to be a quiet child who played by himself, but his language slowly emerged. He would surprise us each day with a new word. Once, at pet store, he looked at a puppy and said "poop." You couldn't imagine how happy we were to hear that word. Spontaneous and functional - what we always hoped for! I started recording all of the things he said back then. Seven years later, I still write down his funny quotes and thoughts about life.
By the age of 5, in his final months of preschool, Joey was mainstreamed into a general education classroom. Without early intervention, ABA, and determination, this never could have happened.
We have continued to work on my son's communication and social skills. He plays team sports (soccer and flag football) and does really well at school. His favorite subjects are math and science. He has a wide variety of interests and he shares those interests with his friends from school. He gets invited to birthday parties and has weekly play dates. These are things I used to only dream of, as I feared my son may never speak just 7 years ago.
The best advice I can give is for parents to find professionals that will work with their child and that will also train the parents on how to carry out the different interventions long after the therapists leave. Through the journey with my son, I now help parents as a Behavior Analyst, and spend most of my days training parents. I'm passionate about it because if I hadn't received parent training, I fear my son would not have come as far as he has.
If you are the parent of a newly diagnosed child, find support in your area. The support will help you grieve and heal, while hopefully providing you information and referrals to who will help your child achieve their goals.
Good luck. And never give up hope!
Follow Joey's story at joeyshope.blogspot.com
Today, I celebrate all the families who work tirelessly everyday to make their children's lives better. I also celebrate all of the therapists who work tirelessly to teach children the skills they need to adapt to the crazy world around them. But most of all, I celebrate my sweet boy, who challenged me in a way I never imagined and helped ignite the fire in me to help others. I love you, Joey!
Here is the link: http://ireport.cnn.com/docs/DOC-1115749
My son hit all his physical milestones at the suggested age but he was quiet. Painfully quiet. At 18 months old, he was able to say less than 20 words. By 2 years old, his words were gone.
We started speech therapy right around his 2nd birthday and implemented a Picture Exchange Communication System. Around 2 1/2, he started to imitate us! Shortly after, I participated in a Jump Start program through a Phoenix-based organization and I learned how to work with my son by implementing a home program based on the principles of Applied Behavior Analysis (ABA).
My son continued to be a quiet child who played by himself, but his language slowly emerged. He would surprise us each day with a new word. Once, at pet store, he looked at a puppy and said "poop." You couldn't imagine how happy we were to hear that word. Spontaneous and functional - what we always hoped for! I started recording all of the things he said back then. Seven years later, I still write down his funny quotes and thoughts about life.
By the age of 5, in his final months of preschool, Joey was mainstreamed into a general education classroom. Without early intervention, ABA, and determination, this never could have happened.
We have continued to work on my son's communication and social skills. He plays team sports (soccer and flag football) and does really well at school. His favorite subjects are math and science. He has a wide variety of interests and he shares those interests with his friends from school. He gets invited to birthday parties and has weekly play dates. These are things I used to only dream of, as I feared my son may never speak just 7 years ago.
The best advice I can give is for parents to find professionals that will work with their child and that will also train the parents on how to carry out the different interventions long after the therapists leave. Through the journey with my son, I now help parents as a Behavior Analyst, and spend most of my days training parents. I'm passionate about it because if I hadn't received parent training, I fear my son would not have come as far as he has.
If you are the parent of a newly diagnosed child, find support in your area. The support will help you grieve and heal, while hopefully providing you information and referrals to who will help your child achieve their goals.
Good luck. And never give up hope!
Follow Joey's story at joeyshope.blogspot.com
Monday, March 24, 2014
Parenthood Magazine's shout out to ABA
Thank you, Parents Magazine, for talking about ABA and warning parents about alternative treatments.
Link: http://www.parents.com/health/autism/autism-therapy-and-treatments/?page=1
No two kids on the autism spectrum are the same, and often, neither are their treatments. Here's what you need to know about finding the right approach for your child. 
Autism Spectrum Disorder (ASD) has two main hallmarks: difficulty with communication and social interactions and a tendency toward restricted, repetitive patterns of behavior and interests. But no two children on the spectrum are alike, which can make an ASD diagnosis particularly overwhelming. It can be hard to understand which aspects of your child's behavior and development are part of her ASD and which are typical for her age or just idiosyncratic parts of her personality. You may also worry that your child's issues are too severe or ingrained for treatment to make much difference, but it's important not to lose hope. "With good treatment, many and increasingly more children will get better," says Parents advisor Fred Volkmar, M.D., director of the Child Study Center at Yale University School of Medicine. "By that I mean they will grow up to be self-sufficient adults who can live independently. They may never be problem-free, but we see many children do very well."
If your child has been diagnosed with ASD, you'll need to find an autism specialist who can partner with you in your child's care. That specialist may be a neuropsychologist or neuropsychiatrist, a clinical psychologist or psychiatrist, or a developmental pediatrician. "The key is that he or she has special training in understanding the needs of kids on the spectrum," says Michael Rosenthal, Ph.D., a pediatric neuropsychologist who specializes in autism at the Child Mind Institute in New York City. Your pediatrician should be able to make referrals; you can also contact the Autism Response Team at Autism Speaks for help finding a qualified specialist in your area. Once you find the right therapist, he or she will work with you and your child to devise a treatment program that will look something like this:
Depending on your child's specific needs and progress, other evidence-based approaches might be used. These include pivotal response therapy (PRT), which is derived from applied behavioral analysis; the Early Start Denver Model approach, known for its developmental curriculum of skills; or the TEACCH approach (Training and Education of Autistic and Related Communication Handicapped Children). Many children with ASD also benefit from occupational, physical and speech-language therapies, and others need a kind of hybrid approach, in which therapists choose from a variety of methods to meet their needs. "With children on the milder end of the spectrum, we often find that all they need is a little bit of speech-language therapy to help with social skills," Dr. Rosenthal notes. "Other kids really need the total treatment package."
It's important to understand that most public school systems offer only one kind of autism program. "It varies tremendously by school district whether your child can be in an ABA-based classroom or one with a developmental approach," Dr. Volkmar says. "We run into problems when a kid is diagnosed but the only program available isn't a good match with his needs." If you think your child's current therapeutic approach isn't working, talk to your specialist about the best strategy for switching to something different.
Consider Medication if Appropriate
"Medication can't fix autism itself but it can be useful if a child has some associated problems," Dr. Rosenthal says. For example, some children with ASD also experience high levels of anxiety, inattention, or hyperactivity; medications are often prescribed to help with those issues, which can otherwise interfere with their social and behavioral progress. "When medication can help get the symptoms of the associated problem under control, we often see a big jump in a child's progress," Dr. Rosenthal notes.
Link: http://www.parents.com/health/autism/autism-therapy-and-treatments/?page=1
Autism Therapy and Treatment Options
Autism Spectrum Disorder (ASD) has two main hallmarks: difficulty with communication and social interactions and a tendency toward restricted, repetitive patterns of behavior and interests. But no two children on the spectrum are alike, which can make an ASD diagnosis particularly overwhelming. It can be hard to understand which aspects of your child's behavior and development are part of her ASD and which are typical for her age or just idiosyncratic parts of her personality. You may also worry that your child's issues are too severe or ingrained for treatment to make much difference, but it's important not to lose hope. "With good treatment, many and increasingly more children will get better," says Parents advisor Fred Volkmar, M.D., director of the Child Study Center at Yale University School of Medicine. "By that I mean they will grow up to be self-sufficient adults who can live independently. They may never be problem-free, but we see many children do very well."
If your child has been diagnosed with ASD, you'll need to find an autism specialist who can partner with you in your child's care. That specialist may be a neuropsychologist or neuropsychiatrist, a clinical psychologist or psychiatrist, or a developmental pediatrician. "The key is that he or she has special training in understanding the needs of kids on the spectrum," says Michael Rosenthal, Ph.D., a pediatric neuropsychologist who specializes in autism at the Child Mind Institute in New York City. Your pediatrician should be able to make referrals; you can also contact the Autism Response Team at Autism Speaks for help finding a qualified specialist in your area. Once you find the right therapist, he or she will work with you and your child to devise a treatment program that will look something like this:
Find the Right Behavioral Therapy
"When we see a newly diagnosed 2- or 3-year-old, our first goal is to get him into pretty aggressive early intervention known as applied behavioral analysis [ABA]," Dr. Rosenthal says. "There is a tremendous amount of research to show that this is the way to go." An ABA-trained therapist will work with your child for 25 or more hours per week, systematically encouraging desired social and communication behaviors and actively teaching the kind of social interactions that other children learn intuitively. The list of goals may include improving attention span, building social interaction skills, and developing verbal and nonverbal communication skills.Depending on your child's specific needs and progress, other evidence-based approaches might be used. These include pivotal response therapy (PRT), which is derived from applied behavioral analysis; the Early Start Denver Model approach, known for its developmental curriculum of skills; or the TEACCH approach (Training and Education of Autistic and Related Communication Handicapped Children). Many children with ASD also benefit from occupational, physical and speech-language therapies, and others need a kind of hybrid approach, in which therapists choose from a variety of methods to meet their needs. "With children on the milder end of the spectrum, we often find that all they need is a little bit of speech-language therapy to help with social skills," Dr. Rosenthal notes. "Other kids really need the total treatment package."
It's important to understand that most public school systems offer only one kind of autism program. "It varies tremendously by school district whether your child can be in an ABA-based classroom or one with a developmental approach," Dr. Volkmar says. "We run into problems when a kid is diagnosed but the only program available isn't a good match with his needs." If you think your child's current therapeutic approach isn't working, talk to your specialist about the best strategy for switching to something different.
Consider Medication if Appropriate
"Medication can't fix autism itself but it can be useful if a child has some associated problems," Dr. Rosenthal says. For example, some children with ASD also experience high levels of anxiety, inattention, or hyperactivity; medications are often prescribed to help with those issues, which can otherwise interfere with their social and behavioral progress. "When medication can help get the symptoms of the associated problem under control, we often see a big jump in a child's progress," Dr. Rosenthal notes.
Be Wary of Alternative Treatments
Diets, vitamins, and chelation (a process that is said to remove mercury or other heavy metals from the body) have all been touted as treatments for ASD. But "none of these have any reliable science behind them," Dr. Rosenthal says. And some (particularly chelation, which can cause kidney or liver damage) can be very dangerous. If you want to pursue an alternative therapy for your child, be sure to consult a qualified physician first.Will My Child Recover?
It's important for parents to understand that autism is often a lifelong condition, without any known cure. But good behavioral therapy is extremely effective, especially when it's started as early as possible. "It's not a question of whether a child with ASD can make progress--it's a question of how much progress," Dr. Rosenthal says. In 2013, researchers at the University of Connecticut co-authored a landmark study published in the Journal of Child Psychology and Psychiatry, which showed that some children with ASD can achieve "optimal outcomes." "The 34 children identified in this study were making friends, doing well in school, and generally functioning well," says Dr. Rosenthal, one of the study's co-authors. "They had effectively moved off the spectrum. It's too soon for us to say why these children did so well, but early behavioral intervention does appear to be key." Further research is needed to replicate the results in a bigger population and understand more about what worked so well for these children. Dr. Volkmar, who was not involved in the study, notes that the term "optimal outcome" is subjective: "I know one college-aged boy who by many definitions has 'moved off the spectrum,'" he explains. "But he also can't do his laundry, so we have a long way to go before he's fully functional in all areas of life." But Dr. Volkmar, too, wants parents to stay optimistic. "I have seen many young children make tremendous progress," he says. "There are so many reasons to be hopeful."Monday, March 3, 2014
Losing the Autism Dx - A doctor's persepective
It sounds like Joey isn't protected from having to get a reassessment, but that's ok, because his school doesn't acknowledge his dx anyway.
Link: http://www.huffingtonpost.com/arshya-vahabzadeh/autism-diagnosis_b_4885084.html
Link: http://www.huffingtonpost.com/arshya-vahabzadeh/autism-diagnosis_b_4885084.html
Why Are Children Losing Their Autism Diagnosis?
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Parents of children with autism have many obstacles to getting their child the resources and support that they need. I was therefore concerned to hear about the increasing number of people who are reporting that their children are losing their autism diagnosis.
Why is this happening? Did their autism resolve? Did the parents ask for a second opinion?
In many of these cases the answer to all of these questions is a resounding "no" -- the children didn't change one little bit. What changed was the criteria for diagnosing autism, which is now based on the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This is the guidebook that is used to diagnose a range of different conditions including depression, bipolar disorder, and schizophrenia. There has been some debate as to whether the use of DSM-5 will reduce the number of people diagnosed with autism. Autism Speaks, a prominent autism advocacy group, has established an online survey that is beginning to discover that people with autism are being "undiagnosed" after having been reevaluated under the new criteria.
So why are people worried about losing their autism diagnosis?
A diagnosis of autism helps to ensure that special educational and social opportunities are provided to that individual; additionally, health care insurers are under increasing pressure not to deny coverage to people with an autism diagnosis. The reality for many people is that the loss of their autism diagnosis takes away many of these very helpful, sometimes crucial resources. I should emphasize that the gold standard for diagnosing autism remains a specialist clinical assessment. Doctors and other clinicians may very well have different opinions. Blood tests, brain scans, or psychological testing cannot make or rule out autism.
A little caveat
In order to prevent every child from having to undergo a reassessment, and with the knowledge that losing an autism diagnosis can impact health care and educational resources, a clear caveat was placed into the DSM-5. A stipulation that I feel many people with autism and their caregivers don't know about. This caveat can help protect families from being forced to undergo a "reassessment" on demand from any organization. The DSM-5 clearly states that anyone with an established autism, Asperger's, or pervasive developmental disorder that was diagnosed prior to release of DSM-5 should continue to be given the new diagnosis of autism spectrum disorder. This becomes especially important if there has been no clinical change in the child. It doesn't mean that the parents cannot seek out a second opinion, or that if their child develops new symptoms then other conditions cannot also be diagnosed.
As a physician, I realize that a fundamental part of my work involves moving past a diagnosis, and trying to make my patients lives better. While some children with autism may also have psychiatric or medical conditions that I can help treat, the vast majority benefit hugely from suitable educational and social skills resources. The reality is that these resources are so tightly tied to an autism diagnosis, that "undiagnosing" these children would be detrimental to their longer term outcomes. Our health care and educational systems struggle to help children that require assistance but lack a diagnosis.
Picking and Choosing
I think it would be duplicitous for any organization to pick and choose the components of DSM-5 that one would adhere to when looking at a child with a possible autism diagnosis. We cannot on one hand use the criteria to attempt to "undiagnose" a child with autism (and in the process put their educational, social, and healthcare services into turmoil), while on the other hand deciding to skip over the explicitly stated caveat that a previously made autism diagnose should persist.
I understand, and many researchers have pointed out to me, that grandfathering these autism diagnoses is scientifically messy at best. It may take decades to "clean up" the science; in the meantime, it's my duty to advocate for my patients.
Follow Arshya Vahabzadeh, M.D. on Twitter: www.twitter.com/@vahabzadehMD
In many of these cases the answer to all of these questions is a resounding "no" -- the children didn't change one little bit. What changed was the criteria for diagnosing autism, which is now based on the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This is the guidebook that is used to diagnose a range of different conditions including depression, bipolar disorder, and schizophrenia. There has been some debate as to whether the use of DSM-5 will reduce the number of people diagnosed with autism. Autism Speaks, a prominent autism advocacy group, has established an online survey that is beginning to discover that people with autism are being "undiagnosed" after having been reevaluated under the new criteria.
So why are people worried about losing their autism diagnosis?
A diagnosis of autism helps to ensure that special educational and social opportunities are provided to that individual; additionally, health care insurers are under increasing pressure not to deny coverage to people with an autism diagnosis. The reality for many people is that the loss of their autism diagnosis takes away many of these very helpful, sometimes crucial resources. I should emphasize that the gold standard for diagnosing autism remains a specialist clinical assessment. Doctors and other clinicians may very well have different opinions. Blood tests, brain scans, or psychological testing cannot make or rule out autism.
A little caveat
In order to prevent every child from having to undergo a reassessment, and with the knowledge that losing an autism diagnosis can impact health care and educational resources, a clear caveat was placed into the DSM-5. A stipulation that I feel many people with autism and their caregivers don't know about. This caveat can help protect families from being forced to undergo a "reassessment" on demand from any organization. The DSM-5 clearly states that anyone with an established autism, Asperger's, or pervasive developmental disorder that was diagnosed prior to release of DSM-5 should continue to be given the new diagnosis of autism spectrum disorder. This becomes especially important if there has been no clinical change in the child. It doesn't mean that the parents cannot seek out a second opinion, or that if their child develops new symptoms then other conditions cannot also be diagnosed.
As a physician, I realize that a fundamental part of my work involves moving past a diagnosis, and trying to make my patients lives better. While some children with autism may also have psychiatric or medical conditions that I can help treat, the vast majority benefit hugely from suitable educational and social skills resources. The reality is that these resources are so tightly tied to an autism diagnosis, that "undiagnosing" these children would be detrimental to their longer term outcomes. Our health care and educational systems struggle to help children that require assistance but lack a diagnosis.
Picking and Choosing
I think it would be duplicitous for any organization to pick and choose the components of DSM-5 that one would adhere to when looking at a child with a possible autism diagnosis. We cannot on one hand use the criteria to attempt to "undiagnose" a child with autism (and in the process put their educational, social, and healthcare services into turmoil), while on the other hand deciding to skip over the explicitly stated caveat that a previously made autism diagnose should persist.
I understand, and many researchers have pointed out to me, that grandfathering these autism diagnoses is scientifically messy at best. It may take decades to "clean up" the science; in the meantime, it's my duty to advocate for my patients.
Saturday, October 19, 2013
Happy 9th Birthday Joey!
Happy 9th Birthday to my sweet little pepper! How wonderful to hear you joke with your friends (you have friends!), hear your belly laughs, and know that you are just like the other boys. There is no difference, no standing out. You understand my sass and give it right back to me! Hard to believe that a little more than 6 years ago, you spoke less than 20 words. You amaze me everyday! I am definitely going to annoy you and cry today because half your childhood is over. In the first 9 years, you learned to walk and talk, enjoy Italian food, and ride a bike; you started school and learned how to make friends; you learned how to complete your morning and night routines by yourself; and you learned what it meant to care about someone else. In the next 9 years, you will learn how to drive, go to high school, and become a young man. I can't wait to see what is in store, but know you will always be my little man. "You are the best thing that's ever been mine." I <3 you!
Favorites from your 9th year:
Games: Skylanders, Sonic Colors
Food: Noodle soup, oatmeal cream pies, Sidekicks shakes, vanilla shakes, Lunchables, Crunch bars, hot dogs
Sports to play: Soccer (in your 3rd season now!)
Friends: Connor (play time every week), Chase, Donovyn & Tristyn, and Xavier (all of whom were at Guys Night)
Clothes: still anything soft but we're slowly working into itchy clothes territory!
Favorites from your 9th year:
Games: Skylanders, Sonic Colors
Food: Noodle soup, oatmeal cream pies, Sidekicks shakes, vanilla shakes, Lunchables, Crunch bars, hot dogs
Sports to play: Soccer (in your 3rd season now!)
Friends: Connor (play time every week), Chase, Donovyn & Tristyn, and Xavier (all of whom were at Guys Night)
Clothes: still anything soft but we're slowly working into itchy clothes territory!
Monday, August 19, 2013
Joey's Hope Blog is 5 years old!
To commemorate the 5th anniversary of starting this blog and documenting our journey, I decided to repost the very 1st post. My, how far we've come.
Joey's Journey in Silence
Joey's Journey in Silence
Joseph was born October 19, 2004. He was by all means a pleasant baby. He was sleeping through the night at 6 weeks. He reached all his physical milestones early or at the appropriate time. He even had his full set of teeth in by his 1st birthday...yet he barely said a word. At his one year check up, his pediatrician asked how many words he spoke and he barely said ten.
During his second year, Joey was noticeably quiet. As friends' children the same age were advancing with their speech, Joey was not. He was more advanced than other children when it came to everything else so I wasn't worried. As his second birthday approached, my Mom voiced her concern that he wasn't repeating after us. I spoke to his pediatrician who ordered a hearing test and a consultation with an ENT. The audiologists were concerned and wanted to see him back for a retest when the middle ear fluid cleared up, while the ENT thought it was too soon to put tubes in his ears. The audiologists also hooked me up with a program through the state to get Joey started with speech therapy, which I started shortly after Joey's 2nd birthday.
I had Joey's hearing retested in March '07 and again I was told to bring him back when there was no middle ear fluid. He was prone to ear infections but was not having one at the time of the test so how was I to know when the middle ear fluid was present? I brought him back to the ENT, who finally agreed to place tubes in both ears. Joey had his surgery a few weeks later and on the very same day, he started repeating after us!
The ENT said Joey had "glue ear" because the middle ear fluid was solidifying. He heard everything as if he were underwater. I can't imagine what that was like and feel terrible for not catching it sooner. When your children don't have a voice, parents need to be their voice and I failed my son by not being his soon enough.
During his second year, Joey was noticeably quiet. As friends' children the same age were advancing with their speech, Joey was not. He was more advanced than other children when it came to everything else so I wasn't worried. As his second birthday approached, my Mom voiced her concern that he wasn't repeating after us. I spoke to his pediatrician who ordered a hearing test and a consultation with an ENT. The audiologists were concerned and wanted to see him back for a retest when the middle ear fluid cleared up, while the ENT thought it was too soon to put tubes in his ears. The audiologists also hooked me up with a program through the state to get Joey started with speech therapy, which I started shortly after Joey's 2nd birthday.
I had Joey's hearing retested in March '07 and again I was told to bring him back when there was no middle ear fluid. He was prone to ear infections but was not having one at the time of the test so how was I to know when the middle ear fluid was present? I brought him back to the ENT, who finally agreed to place tubes in both ears. Joey had his surgery a few weeks later and on the very same day, he started repeating after us!
The ENT said Joey had "glue ear" because the middle ear fluid was solidifying. He heard everything as if he were underwater. I can't imagine what that was like and feel terrible for not catching it sooner. When your children don't have a voice, parents need to be their voice and I failed my son by not being his soon enough.
Sunday, August 18, 2013
5 years ago today
It's hard to believe 5 years ago, we had our 1st appointment at the Melmed Center (Joey was dx'd later on 9/11). Who knew how much our lives were about to change...
And on August 19th, it will be 5 years ago that I started this blog!
This is what my Mom wrote on Facebook in response to my status above:
August 18th has always been an important date in my life -- 41 years ago I lost my father and my life was changed forever but it became a happy date when we bought our house on LI 36 years ago and all our lives changed for the better. I knew it would be another important day when we took Joey to Melmed 5 years ago -- I'd like to think my father has been watching over Joey and helping with the phenomenal changes that have taken place these last 5 years -- thanks Dad!
And on August 19th, it will be 5 years ago that I started this blog!
This is what my Mom wrote on Facebook in response to my status above:
August 18th has always been an important date in my life -- 41 years ago I lost my father and my life was changed forever but it became a happy date when we bought our house on LI 36 years ago and all our lives changed for the better. I knew it would be another important day when we took Joey to Melmed 5 years ago -- I'd like to think my father has been watching over Joey and helping with the phenomenal changes that have taken place these last 5 years -- thanks Dad!
The first week (and a half) of 3rd grade
We have survived our first full week (and 2 days)!
The first day went well. We got there 24 minutes early and just in time to snag the last parking spot. New classroom, no familiar faces, and he says he doesn't remember his teacher, who is the mother of a classmate from 2nd grade / former t-ball teammate. I annoyed him with my usual pictures. He was anxious just to get into his classroom. I told him to unpack his backpack and he said "You do it." I knew he was feeling anxious so I helped him unpack and showed him how to organize his desk.
This was the first year I didn't pick him up from the first day - my dad did - so I was anxious to find out how his first day went. When I got to my parents house to pick him up, I asked "How was your first day?" His response? "Horrible." Why? Because he says it made summer vacation end.
The second day went better and he came home telling me that his day was "good" which was an upgrade from "horrible." But it didn't start out good. We arrived on the playground like we did everyday last year. I waited with him for the bell to ring and for him to line up with his class. But today was different. I totally forgot that it was a new year and a new grade, which meant a new line to find.
When the bell rang, I asked him if he knew where to go. He said "Yes" and ran off. As I turned to leave, he ran over to me with panic in his voice and said "I don't know where to go." We walked over and when we weren't sure, I asked Mrs. Yanez. She said her line was right in front. When I got Joey in the right line, he said, "This doesn't look like my class. I don't know anybody." I assured him it was the right class and pointed out Kayla from 1st grade. He was still visibly upset. I was so worried about him that I drove up to school between appointments in S. Phoenix to have lunch with him and make sure he was having a good day. When I got there, he introduced me to Samuel and Leland. Samuel is the boy that earlier that day, Mrs. Yanez told me Joey was playing rock, paper, scissors with on the 1st day and resulted in him having his desk moved. When she told me, I couldn't believe my ears. My son got in trouble for socializing! Music to my ears! Words I never thought I'd hear!!
The third day started without a hitch and ended with Joey and Connor walking out together and asking if they could have a play date. I had a feeling this might happen and I'm glad it did. Connor had asked the day before if they could have a play date soon and on the way to pick Joey up from school, Connor's dad had texted me about the possibility that afternoon.
Monday started the first full week of school. It also was the day he was ok with me leaving him on the playground before the bell rang! We got into the groove of daily homework and a new way of taking a spelling test. He forgot his folder on Monday and we had to run back to school. He knew I was upset and said "I'm very sorry. Is there any way I can make it up to you?" He promised he wouldn't do it again. My boy is growing up.
By Wednesday, it was time for Grandpa to pick him up again and I guess there was an issue on the first day. Well, there is always confusion on the first day, but I found out through Mrs. Yanez that he told her he was an am/pm kid and so he was there instead of at Jamba Juice. When we were trying to coordinate where Grandpa would pick him up, he was visibly frustrated. I know it was because he gets confused and is starting to feel frustrated about it. Another thing to show he is growing up. I tell myself that we can work on it. As a mom, I just never want him to feel anything other than happy.
The first full week ended with Connor coming to our house for a play date. Unfortunately, at 2:45p.m., I was called by the nurse because the teacher sent Joey to the nurse because "he smelled. He smelled yesterday but it was worse today" (that's what the nurse said the teacher said). It was a bump in the road that we've been working on and it has improved, but that incident was a reminder that we still have some work to do.
On to full week #2 and a wonderful year of growth, new friends, new experiences, and overcoming learning obstacles. I love my sweet boy!
The first day went well. We got there 24 minutes early and just in time to snag the last parking spot. New classroom, no familiar faces, and he says he doesn't remember his teacher, who is the mother of a classmate from 2nd grade / former t-ball teammate. I annoyed him with my usual pictures. He was anxious just to get into his classroom. I told him to unpack his backpack and he said "You do it." I knew he was feeling anxious so I helped him unpack and showed him how to organize his desk.
This was the first year I didn't pick him up from the first day - my dad did - so I was anxious to find out how his first day went. When I got to my parents house to pick him up, I asked "How was your first day?" His response? "Horrible." Why? Because he says it made summer vacation end.
The second day went better and he came home telling me that his day was "good" which was an upgrade from "horrible." But it didn't start out good. We arrived on the playground like we did everyday last year. I waited with him for the bell to ring and for him to line up with his class. But today was different. I totally forgot that it was a new year and a new grade, which meant a new line to find.
When the bell rang, I asked him if he knew where to go. He said "Yes" and ran off. As I turned to leave, he ran over to me with panic in his voice and said "I don't know where to go." We walked over and when we weren't sure, I asked Mrs. Yanez. She said her line was right in front. When I got Joey in the right line, he said, "This doesn't look like my class. I don't know anybody." I assured him it was the right class and pointed out Kayla from 1st grade. He was still visibly upset. I was so worried about him that I drove up to school between appointments in S. Phoenix to have lunch with him and make sure he was having a good day. When I got there, he introduced me to Samuel and Leland. Samuel is the boy that earlier that day, Mrs. Yanez told me Joey was playing rock, paper, scissors with on the 1st day and resulted in him having his desk moved. When she told me, I couldn't believe my ears. My son got in trouble for socializing! Music to my ears! Words I never thought I'd hear!!
The third day started without a hitch and ended with Joey and Connor walking out together and asking if they could have a play date. I had a feeling this might happen and I'm glad it did. Connor had asked the day before if they could have a play date soon and on the way to pick Joey up from school, Connor's dad had texted me about the possibility that afternoon.
Monday started the first full week of school. It also was the day he was ok with me leaving him on the playground before the bell rang! We got into the groove of daily homework and a new way of taking a spelling test. He forgot his folder on Monday and we had to run back to school. He knew I was upset and said "I'm very sorry. Is there any way I can make it up to you?" He promised he wouldn't do it again. My boy is growing up.
By Wednesday, it was time for Grandpa to pick him up again and I guess there was an issue on the first day. Well, there is always confusion on the first day, but I found out through Mrs. Yanez that he told her he was an am/pm kid and so he was there instead of at Jamba Juice. When we were trying to coordinate where Grandpa would pick him up, he was visibly frustrated. I know it was because he gets confused and is starting to feel frustrated about it. Another thing to show he is growing up. I tell myself that we can work on it. As a mom, I just never want him to feel anything other than happy.
The first full week ended with Connor coming to our house for a play date. Unfortunately, at 2:45p.m., I was called by the nurse because the teacher sent Joey to the nurse because "he smelled. He smelled yesterday but it was worse today" (that's what the nurse said the teacher said). It was a bump in the road that we've been working on and it has improved, but that incident was a reminder that we still have some work to do.
On to full week #2 and a wonderful year of growth, new friends, new experiences, and overcoming learning obstacles. I love my sweet boy!
Wednesday, August 14, 2013
Interesting study linking the use of Pitocin to Autism
My clinical director posted an interesting study today about the increased use of Pitocin being linked to the increased number of children being diagnosed with Autism. Read more below.
Link: http://www.wnd.com/2013/08/study-links-autism-to-birth-inductions/
Can inducing labor cause autism?
A new study out today in the journal JAMA Pediatrics says that induced labor might be the reason for the spike in autism over the last couple of decades.
Autism is the most pervasive childhood disease today, with one child born every 20 minutes who will fall into the autism spectrum, according to the Centers for Disease Control and Prevention, the CDC. It is more prevalent than Down Syndrome, diabetes and cancer combined.
Duke University and the University of Michigan conducted the study. Researchers looked at mothers whose births were induced or hurried with the drug Pitocin and found that there may be a connection between induction and children born with autism, or ASD.
Pitocin is a synthetic form of oxytocin, a naturally occurring hormone that causes feelings of warmth and relationship toward others.
Pitocin, made from the pituitary glands of cattle, is used to induce or speed up labor. Its use has increased in the last two decades, according to the CDC, as has the diagnosis of autism.
That correlation may have prompted the study.
Read the study.
Autism spectrum disorder is characterized by difficulties in social interaction and by repetitive behaviors, according to AutismSpeaks.org.
Mary Ueland, a Missouri-based midwife and owner of a birth and wellness center, told WND that as a midwife who follows research closely, she finds it “concerning that as a society we have made pharmaceutical induction the norm, even for women with no known complications.”
“We have not studied the effects of Pitocin imprinting an infant’s brain,” she said.
She poses the question: “Could it be that bombarding an infant’s oxytocin receptors with far larger than normal amounts of synthetic oxytocin could destroy or ruin their oxytocin receptors?”
Earlier studies indicated that there was a connection between Pitocin and adverse effects on neonatal outcomes, such as lower Apgar scores, and time spent in neonatal intensive care units.
Other studies examined a possible connection between vaccines and autism.
Dr. Eric Hollander, chairman of psychiatry and director of the Seaver and New York Autism Center of Excellence at Mount Sinai School of Medicine, suggested that “a possible imbalance of blood levels of oxytocin may be associated with certain forms of ASDs.
“I think that this is an important area for future development to understand the underlying root cause of ASDs and develop treatments to help manage symptoms,” he said.
Dr. C. Sue Carter conducted a study that confirmed a link between oxytocin and ASDs.
She said that the oxytocin receptor chemicals (Single Nucleotide Polymorphisms-SNP’s) may be compromised during Pitocin induction and that further research was warranted. Her work has resulted in studies examining whether the use of oxytocin will benefit patients with ASDs.
“Patterns of oxytocin, even in [the] blood of nonautistic persons, are not well described. We don’t understand the developmental effects of oxytocin very well, and it is possible that the most important effects of oxytocin on ASDs occur in the prenatal or early postnatal period,” Carter explained.
Both Hollander and Carter have studied the possibility that excess oxytocin, given intravenously during birth via Pitocin, might be a potential cause of ASDs.
“In some individuals whose oxytocin system could be genetically vulnerable, a strong environmental early hit while the brain is still developing could down-regulate the oxytocin system, leading to developmental problems. But this is only a hypothesis that has been observed by association,” Hollander commented.
Carter said the biggest hurdle in studies are finding people who have not been exposed to Pitocin, because it is given so frequently. The last two decades have seen such an increase, that perhaps examining 30- and 40-year-olds would offer some clues.
The obvious coincidence of the massive increase in Pitocin use, coupled with the massive increase in Autism diagnoses is suspect. In 1980, one child in 5,000 had autism. In 1990, one child in 1,000 was diagnosable. In 2000, 1 in 500; 2004, one in 166; in 2007, one in 150; and in 2010, one in 110 children had autism. Today, one in 70 boys are ASD. The numbers are mind boggling, to the point of epidemic, according to the CDC.
Carter said it’s often assumed that Pitocin does not reach the infant in amounts that would directly affect it.
“Increasing amounts of Pitocin are being given in some hospitals, though,” she said. “In our most recent research in animals, a little extra Ooxytocin given directly to newborns facilitated certain forms of social behavior, but larger amounts were disruptive.”
Michelle Huffman, mother of two, said she was forced to use Pitocin in both of her births, “and I begged not to.”
“Of course I worried about the effect on my babies, but they told me that the Pitocin would not even get through to the babies in traceable amounts,” she said.
Most mothers and birth professionals agree that Pitocin makes the contractions very intense, sometimes too much so. Hospital births may use Pitocin to time the births so that they are paced with a doctor’s presence.
Other birth professionals, like midwives, tend to reject Pitocin use as unnatural and embrace other birth facilitating measures such as walking, massage and positioning, sometimes in a warm bath or pool.
Midwifery today cites the work of Dr. Michel Odent, founder of the Primal Health Research Center in London.
He says that “autistic children show alterations in the oxytocin system.”
The period of birth, he says, causes a natural but dramatic reorganization of central oxytocin binding. He speculates that artificial induction of labor could create a situation in which that reorganization is dangerously interrupted.
Other factors may be at play. Neurologist Lawrence Lavine says that today’s obstetrical practices might be to blame for some of the problems, while use of Pitocin and epidurals might represent the structural factors leading to ASD.
As the author of “A Natural Guide to Autism,” Stephanie Marohn said the use of Pitocin elicits contractions so hard, it is like “using the child’s head as a battering ram to force the pelvis to reshape to accommodate it.”
Marohn says it is natural then that the compressions compromise the cranial nerves and nervous system, resulting in cranial compression.
The research leaves room for studies of other possible problems with induction.
Read more at http://www.wnd.com/2013/08/study-links-autism-to-birth-inductions/#2WiKT0bRcC9EA5iW.99
Link: http://www.wnd.com/2013/08/study-links-autism-to-birth-inductions/
WND EXCLUSIVE
Study links autism to birth inductions
JAMA Pediatrics eyes labor hurried along by drug Pitocin
Subscribe to feedA new study out today in the journal JAMA Pediatrics says that induced labor might be the reason for the spike in autism over the last couple of decades.
Duke University and the University of Michigan conducted the study. Researchers looked at mothers whose births were induced or hurried with the drug Pitocin and found that there may be a connection between induction and children born with autism, or ASD.
Pitocin is a synthetic form of oxytocin, a naturally occurring hormone that causes feelings of warmth and relationship toward others.
Pitocin, made from the pituitary glands of cattle, is used to induce or speed up labor. Its use has increased in the last two decades, according to the CDC, as has the diagnosis of autism.
That correlation may have prompted the study.
Read the study.
Autism spectrum disorder is characterized by difficulties in social interaction and by repetitive behaviors, according to AutismSpeaks.org.
Mary Ueland, a Missouri-based midwife and owner of a birth and wellness center, told WND that as a midwife who follows research closely, she finds it “concerning that as a society we have made pharmaceutical induction the norm, even for women with no known complications.”
“We have not studied the effects of Pitocin imprinting an infant’s brain,” she said.
She poses the question: “Could it be that bombarding an infant’s oxytocin receptors with far larger than normal amounts of synthetic oxytocin could destroy or ruin their oxytocin receptors?”
Earlier studies indicated that there was a connection between Pitocin and adverse effects on neonatal outcomes, such as lower Apgar scores, and time spent in neonatal intensive care units.
Other studies examined a possible connection between vaccines and autism.
Dr. Eric Hollander, chairman of psychiatry and director of the Seaver and New York Autism Center of Excellence at Mount Sinai School of Medicine, suggested that “a possible imbalance of blood levels of oxytocin may be associated with certain forms of ASDs.
“I think that this is an important area for future development to understand the underlying root cause of ASDs and develop treatments to help manage symptoms,” he said.
Dr. C. Sue Carter conducted a study that confirmed a link between oxytocin and ASDs.
She said that the oxytocin receptor chemicals (Single Nucleotide Polymorphisms-SNP’s) may be compromised during Pitocin induction and that further research was warranted. Her work has resulted in studies examining whether the use of oxytocin will benefit patients with ASDs.
“Patterns of oxytocin, even in [the] blood of nonautistic persons, are not well described. We don’t understand the developmental effects of oxytocin very well, and it is possible that the most important effects of oxytocin on ASDs occur in the prenatal or early postnatal period,” Carter explained.
Both Hollander and Carter have studied the possibility that excess oxytocin, given intravenously during birth via Pitocin, might be a potential cause of ASDs.
“In some individuals whose oxytocin system could be genetically vulnerable, a strong environmental early hit while the brain is still developing could down-regulate the oxytocin system, leading to developmental problems. But this is only a hypothesis that has been observed by association,” Hollander commented.
Carter said the biggest hurdle in studies are finding people who have not been exposed to Pitocin, because it is given so frequently. The last two decades have seen such an increase, that perhaps examining 30- and 40-year-olds would offer some clues.
The obvious coincidence of the massive increase in Pitocin use, coupled with the massive increase in Autism diagnoses is suspect. In 1980, one child in 5,000 had autism. In 1990, one child in 1,000 was diagnosable. In 2000, 1 in 500; 2004, one in 166; in 2007, one in 150; and in 2010, one in 110 children had autism. Today, one in 70 boys are ASD. The numbers are mind boggling, to the point of epidemic, according to the CDC.
Carter said it’s often assumed that Pitocin does not reach the infant in amounts that would directly affect it.
“Increasing amounts of Pitocin are being given in some hospitals, though,” she said. “In our most recent research in animals, a little extra Ooxytocin given directly to newborns facilitated certain forms of social behavior, but larger amounts were disruptive.”
Michelle Huffman, mother of two, said she was forced to use Pitocin in both of her births, “and I begged not to.”
“Of course I worried about the effect on my babies, but they told me that the Pitocin would not even get through to the babies in traceable amounts,” she said.
Most mothers and birth professionals agree that Pitocin makes the contractions very intense, sometimes too much so. Hospital births may use Pitocin to time the births so that they are paced with a doctor’s presence.
Other birth professionals, like midwives, tend to reject Pitocin use as unnatural and embrace other birth facilitating measures such as walking, massage and positioning, sometimes in a warm bath or pool.
Midwifery today cites the work of Dr. Michel Odent, founder of the Primal Health Research Center in London.
He says that “autistic children show alterations in the oxytocin system.”
The period of birth, he says, causes a natural but dramatic reorganization of central oxytocin binding. He speculates that artificial induction of labor could create a situation in which that reorganization is dangerously interrupted.
Other factors may be at play. Neurologist Lawrence Lavine says that today’s obstetrical practices might be to blame for some of the problems, while use of Pitocin and epidurals might represent the structural factors leading to ASD.
As the author of “A Natural Guide to Autism,” Stephanie Marohn said the use of Pitocin elicits contractions so hard, it is like “using the child’s head as a battering ram to force the pelvis to reshape to accommodate it.”
Marohn says it is natural then that the compressions compromise the cranial nerves and nervous system, resulting in cranial compression.
The research leaves room for studies of other possible problems with induction.
Read more at http://www.wnd.com/2013/08/study-links-autism-to-birth-inductions/#2WiKT0bRcC9EA5iW.99
Wednesday, August 7, 2013
Independent Joe on his way to 3rd Grade
August 6, 2013
My sweet boy. I have no words. I broke down earlier as I packed up his new Skylanders Giants backpack with all of his supplies for his 1st day of 3rd grade tomorrow.
I told myself I wouldn't cry. I told Joey I wouldn't cry. I lied to both of us.
There were so many times over the course of the summer that I was just in awe of the little man that my sweet boy is becoming. The things he said, the way he acted, the concern he showed for his friends and family, the confident reader he is becoming, the choices he is started to make for himself (his clothes, activities, etc.)...all of these things show how his personality is changing and how he is growing up.
I don't know why I get misty every year on the first and last days of school. I'm not sure if it is because he is my one and only baby boy, if it's because of the journey we have been on and how far we've come, or if it's because every year, he needs me just a little bit less.
I mean, let's face it...every mom goes through a constant identity crisis for 18 years. We become somebody's sole supporter the day we give birth, and as the years go by, we struggle back and forth with wanting to be needed and fighting to get our independence back, hoping we aren't need sped so much, even just for one day.
I love how far Independent Joe has come. But now matter how old he gets or fast he grows out of my arms, I will always long for the days when he would say, "Do you need some snuggle time? Because I'm available."
My sweet boy. I have no words. I broke down earlier as I packed up his new Skylanders Giants backpack with all of his supplies for his 1st day of 3rd grade tomorrow.
I told myself I wouldn't cry. I told Joey I wouldn't cry. I lied to both of us.
There were so many times over the course of the summer that I was just in awe of the little man that my sweet boy is becoming. The things he said, the way he acted, the concern he showed for his friends and family, the confident reader he is becoming, the choices he is started to make for himself (his clothes, activities, etc.)...all of these things show how his personality is changing and how he is growing up.
I don't know why I get misty every year on the first and last days of school. I'm not sure if it is because he is my one and only baby boy, if it's because of the journey we have been on and how far we've come, or if it's because every year, he needs me just a little bit less.
I mean, let's face it...every mom goes through a constant identity crisis for 18 years. We become somebody's sole supporter the day we give birth, and as the years go by, we struggle back and forth with wanting to be needed and fighting to get our independence back, hoping we aren't need sped so much, even just for one day.
I love how far Independent Joe has come. But now matter how old he gets or fast he grows out of my arms, I will always long for the days when he would say, "Do you need some snuggle time? Because I'm available."
Thursday, July 4, 2013
Board Certified Behavior Analyst. Wait...that's me!
Today started out like any other day. Although I had been waiting for weeks to get the results from the BACB, I tried to put it in the back of my mind. I even started planning alternate career choices if I didn't feel like redoing my course work. Call me a negative realist.
I sat in the movie theatre, waiting for Despicable Me 2 to start. I checked FB before shutting my phone down, and someone posted on one of the BA message boards that the results were posted.
I panicked.
Do I check now and chance ruining the movie that Joey has been waiting over a year to see?
Or do I wait and get increasingly anxious as the movie goes on.
I checked. The site page looked different. I scrolled down. My jaw dropped.
Then I saw the word PASSED.
Holy crap!
My mom looked at me and asked me what was wrong. I stammered when saying "I passed my exam."
I texted and then called my husband.
I texted my boss and told her I had bad news. She said she couldn't handle any more. I told her she was stuck with me and I passed. She called me crying.
I texted Nick and told him I had bad news. He called me and I told him to buy me that bottle of vodka he owed me.
I texted my closest family members and co-worker friends.
I posted to FB: "What did I do today? Played games, tried not to die in the heat, saw a movie and....found out I'm now a Board Certified Behavior Analyst! In the words of my son: "Boom!"
I am still in shock. This is surreal.
And so a new journey begins. I am beyond excited. And relieved. And proud of myself for not giving up. And forever thankful to my Joey, who started me on this journey. He is forever my inspiration to be a better person. I hope I make him proud.
I sat in the movie theatre, waiting for Despicable Me 2 to start. I checked FB before shutting my phone down, and someone posted on one of the BA message boards that the results were posted.
I panicked.
Do I check now and chance ruining the movie that Joey has been waiting over a year to see?
Or do I wait and get increasingly anxious as the movie goes on.
I checked. The site page looked different. I scrolled down. My jaw dropped.
Then I saw the word PASSED.
Holy crap!
My mom looked at me and asked me what was wrong. I stammered when saying "I passed my exam."
I texted and then called my husband.
I texted my boss and told her I had bad news. She said she couldn't handle any more. I told her she was stuck with me and I passed. She called me crying.
I texted Nick and told him I had bad news. He called me and I told him to buy me that bottle of vodka he owed me.
I texted my closest family members and co-worker friends.
I posted to FB: "What did I do today? Played games, tried not to die in the heat, saw a movie and....found out I'm now a Board Certified Behavior Analyst! In the words of my son: "Boom!"
I am still in shock. This is surreal.
And so a new journey begins. I am beyond excited. And relieved. And proud of myself for not giving up. And forever thankful to my Joey, who started me on this journey. He is forever my inspiration to be a better person. I hope I make him proud.
Tuesday, May 28, 2013
Farewell 2nd grade
What a month May has been.
We wrapped a 2nd season of soccer. Joey had a great time this season. Not only did he ask to sign up so I know the motivation was there and last season was reinforcing to him, but he got to play with Hannah, Aydan, and Connor from his class. AND Lexie, our next door neighbor was also on the team. Also, Hannah's dad was the coach, who just happens to be an OT with tons of experience with kids with special needs. Could I have asked for any better scenario.
May was also the month that Joey started having after school hang outs with Connor. 2 Fridays at his house and then 1 Friday at ours. We have plans to see Connor this Thursday, and Joey even gave up one of his end of school gifts (3 Skylander Giants figurines) so he could give Connor "another Skylander Giant because he doesn't have a lot of giants." So sweet!
Joey also started Kumon on 5/21. This is another step towards becoming a better reader.
And then there was the farewell to 2nd grade and to Mr. Svorinic at Parkridge (he is heading to Liberty in August). I was pleasantly surprised that on the last day of school, Mrs. Stone (his reading teacher) told me he has already mastered his IEP reading goals that were written 1 month ago!
I am so proud of him and how hard he works! I wonder what 3rd grade will have in store for us?
We wrapped a 2nd season of soccer. Joey had a great time this season. Not only did he ask to sign up so I know the motivation was there and last season was reinforcing to him, but he got to play with Hannah, Aydan, and Connor from his class. AND Lexie, our next door neighbor was also on the team. Also, Hannah's dad was the coach, who just happens to be an OT with tons of experience with kids with special needs. Could I have asked for any better scenario.
May was also the month that Joey started having after school hang outs with Connor. 2 Fridays at his house and then 1 Friday at ours. We have plans to see Connor this Thursday, and Joey even gave up one of his end of school gifts (3 Skylander Giants figurines) so he could give Connor "another Skylander Giant because he doesn't have a lot of giants." So sweet!
Joey also started Kumon on 5/21. This is another step towards becoming a better reader.
And then there was the farewell to 2nd grade and to Mr. Svorinic at Parkridge (he is heading to Liberty in August). I was pleasantly surprised that on the last day of school, Mrs. Stone (his reading teacher) told me he has already mastered his IEP reading goals that were written 1 month ago!
I am so proud of him and how hard he works! I wonder what 3rd grade will have in store for us?
Monday, May 20, 2013
Joey, nitrous oxide and butter
Joey had nitrous oxide at the dentist today when they filled a small cavity and sealed 3 of his teeth. This was his first time. I was nervous. The neurologist said it would be safe.
Joey went back like a trooper and a half hour later, he was done. He looked a little "off" and the assistant said he threw up a little. As we walked outside, he said he wasn't feeling well. In the car, he asked "What do you call this sickness?" I said "A side effect from the gas." He asked, "Well how do you get rid of it?" I told him that he needed to eat soft foods, drink liquids, and maybe poop and pee it out.
When we got home, he said "Mama, I'm gonna do what you said: pee and poop." He informed me he pooped twice and then told me he was sleepy. He cuddled up to me and slept for almost 2 hours. He told me after that he felt better after his nap. He was back to his normal crazy goofy self
He ate Lipton noodle soup and had Italian bread with butter for dinner. He ate good! I saw him playing with Cocoa while he was eating. Later on, I noticed that he had butter inside the leg of his pants. I asked, "How did you get butter in your pants?" How often do you hear yourself asking that? I guess it went flying during his bread tug of war with Cocoa.
Well now we know the effects of nitrous and that he is ok with it, for the most part.
Joey went back like a trooper and a half hour later, he was done. He looked a little "off" and the assistant said he threw up a little. As we walked outside, he said he wasn't feeling well. In the car, he asked "What do you call this sickness?" I said "A side effect from the gas." He asked, "Well how do you get rid of it?" I told him that he needed to eat soft foods, drink liquids, and maybe poop and pee it out.
When we got home, he said "Mama, I'm gonna do what you said: pee and poop." He informed me he pooped twice and then told me he was sleepy. He cuddled up to me and slept for almost 2 hours. He told me after that he felt better after his nap. He was back to his normal crazy goofy self
He ate Lipton noodle soup and had Italian bread with butter for dinner. He ate good! I saw him playing with Cocoa while he was eating. Later on, I noticed that he had butter inside the leg of his pants. I asked, "How did you get butter in your pants?" How often do you hear yourself asking that? I guess it went flying during his bread tug of war with Cocoa.
Well now we know the effects of nitrous and that he is ok with it, for the most part.
Tuesday, May 14, 2013
Joe becomes an ABA therapist
While Joey was waiting for speech to start, our former neighbor was attempting to elope from OT and get Joey's iPad. Each time, I told Joey to pause his game and wait for the boy to go back to his OT. When the boy was done, he asked Joey for the iPad and Joey says, "Umm are you done with your therapist?" I told him he should come work with me and he said "You couldn't handle me for a whole day."
Friday, May 3, 2013
Leaving the nest for a playdate
When I went to school to pick Joey up, something extraordinary happened: Joey asked me if he could go to a friend's house to play!!! This is the FIRST time ever!!! And this helicopter mom let him go. Now I have empty nest syndrome.
It was so cute. I wish I could bottle the moment and enjoy it over and over! Joey ran up to me and said, "Can I go over Connor's house to play?" I said, "Sure, maybe one day soon" and he said, "No, we want to do it now." Then Connor came over and asked if Joey could come over. I asked if it was ok with his parents and he said "I'll go ask."
Joe and I walked a little slower than Connor did to his Dad's car. I figured I would allow time for him to talk to his Dad so his Dad wouldn't be put on the spot. By the time I got to the car, Scott, Connor's Dad, said it was ok for Joe to come over. We exchanged phone numbers and I got their address, buckled Joe in the back seat, told him to have fun, closed the door and waved goodbye.
How did this happen?
I promptly showed up at 5:58 p.m. to pick Joe up. He had a great time. They both wanted to know if they could have a sleep over, or get together Saturday, or maybe Sunday. Too cute! Let's not forget they will see each other at 9 a.m. tomorrow for soccer.
It was so cute. I wish I could bottle the moment and enjoy it over and over! Joey ran up to me and said, "Can I go over Connor's house to play?" I said, "Sure, maybe one day soon" and he said, "No, we want to do it now." Then Connor came over and asked if Joey could come over. I asked if it was ok with his parents and he said "I'll go ask."
Joe and I walked a little slower than Connor did to his Dad's car. I figured I would allow time for him to talk to his Dad so his Dad wouldn't be put on the spot. By the time I got to the car, Scott, Connor's Dad, said it was ok for Joe to come over. We exchanged phone numbers and I got their address, buckled Joe in the back seat, told him to have fun, closed the door and waved goodbye.
How did this happen?
I promptly showed up at 5:58 p.m. to pick Joe up. He had a great time. They both wanted to know if they could have a sleep over, or get together Saturday, or maybe Sunday. Too cute! Let's not forget they will see each other at 9 a.m. tomorrow for soccer.
Wednesday, April 17, 2013
Bye bye Attention Deficit...look there's a chicken...
I make a joke because I am so scattered all the time. I even said, "Look there's a squirrel" in the middle of my vows. But truly a diagnosis is not a joke.
We had Joey's quarterly appointment with his developmental pediatrician at the Melmed Center today. In January, I went in armed with a good report card and a good IEP progress report, plus data from home, to prove to the doc that Joey did not need the Focalin 5 she prescribed in October, after data showed that a low dose of regular Focalin did nothing to improve Joey's attention.
In 2011, when he completed the TOVA assessment, he scored in the double digits on most of it, impulsively hitting buttons and showing low focus. His results were "suggestive of attention deficit disorder."
Tuesday (4/16). Joey scored in the single digits, with a total of -120 (I don't understand this result) and his results were "not suggestive of attention deficit disorder." She did note that although the test is boring, which it's supposed to be, he still paid attention to it. When he came back into the waiting room after the test, he said "It was so boring!" The proctor told me it wasn't supposed to be exciting so they could test how well the patients attend to non-interesting material.
The doc is no longer pushing meds which makes me happy. We will continue to monitor him closely. I know as a parent, I can do things better, like push no electronics after a certain point, and be adamant about an earlier bedtime. There is always something that could use improvement.
Attention is a tricky thing and is a very common issue with kids on the Autism Spectrum. Most get a dual diagnosis. But for Joe, I never felt that he was truly ADD, even if both his parents are.
The doc did say that she would like him to have a pediatric cardiologist do a complete work up on Joey to get a baseline for when he is older, based on his cruddy family heart history.
Other than that, Joey is healthy (53 lbs, same as last time / 4 ft. 1 ins., he grew 1.5 inches).
I am so proud of my big boy and how hard he is working!
We had Joey's quarterly appointment with his developmental pediatrician at the Melmed Center today. In January, I went in armed with a good report card and a good IEP progress report, plus data from home, to prove to the doc that Joey did not need the Focalin 5 she prescribed in October, after data showed that a low dose of regular Focalin did nothing to improve Joey's attention.
In 2011, when he completed the TOVA assessment, he scored in the double digits on most of it, impulsively hitting buttons and showing low focus. His results were "suggestive of attention deficit disorder."
Tuesday (4/16). Joey scored in the single digits, with a total of -120 (I don't understand this result) and his results were "not suggestive of attention deficit disorder." She did note that although the test is boring, which it's supposed to be, he still paid attention to it. When he came back into the waiting room after the test, he said "It was so boring!" The proctor told me it wasn't supposed to be exciting so they could test how well the patients attend to non-interesting material.
The doc is no longer pushing meds which makes me happy. We will continue to monitor him closely. I know as a parent, I can do things better, like push no electronics after a certain point, and be adamant about an earlier bedtime. There is always something that could use improvement.
Attention is a tricky thing and is a very common issue with kids on the Autism Spectrum. Most get a dual diagnosis. But for Joe, I never felt that he was truly ADD, even if both his parents are.
The doc did say that she would like him to have a pediatric cardiologist do a complete work up on Joey to get a baseline for when he is older, based on his cruddy family heart history.
Other than that, Joey is healthy (53 lbs, same as last time / 4 ft. 1 ins., he grew 1.5 inches).
I am so proud of my big boy and how hard he is working!
Tuesday, April 16, 2013
Redirecting goodbyes
Written 4/2/2013:
Goodbyes are said, all of Joey's things are back at the "heavy house" and his Dad is on his way. I was afraid there would be tears from Joey, but in typical Joe fashion, when Daddy said, "I'll see you in September," Joey said, "I can see my face in the doorbell."
It's sad and cute at the same time. I am glad that he is not upset and in tears; however, it shows how detached he can be. Maybe it's his coping mechanism. Only time will tell how well he does with his Dad leaving again.
Update 4/16/2013:
It's been exactly 2 weeks, and Joey has only mentioned his Dad a few times. His Dad, who is also very detached, went 12 days without so much as a text to see how Joey was doing? He texted me Sunday and then called a few times. Is it wrong that I want to put Daddy on extinction and ignore his attempts at contact for 12 days? Ben had a whole week before his fiance arrived, and still he couldn't find time to reach out to his son. Seriously, how long could a call take? Joey only ever talks for a few minutes. And how long does it take to text? Even the slowest texter can get it done pretty quick.
I wonder if and when my heart will stop breaking for my son.
Goodbyes are said, all of Joey's things are back at the "heavy house" and his Dad is on his way. I was afraid there would be tears from Joey, but in typical Joe fashion, when Daddy said, "I'll see you in September," Joey said, "I can see my face in the doorbell."
It's sad and cute at the same time. I am glad that he is not upset and in tears; however, it shows how detached he can be. Maybe it's his coping mechanism. Only time will tell how well he does with his Dad leaving again.
Update 4/16/2013:
It's been exactly 2 weeks, and Joey has only mentioned his Dad a few times. His Dad, who is also very detached, went 12 days without so much as a text to see how Joey was doing? He texted me Sunday and then called a few times. Is it wrong that I want to put Daddy on extinction and ignore his attempts at contact for 12 days? Ben had a whole week before his fiance arrived, and still he couldn't find time to reach out to his son. Seriously, how long could a call take? Joey only ever talks for a few minutes. And how long does it take to text? Even the slowest texter can get it done pretty quick.
I wonder if and when my heart will stop breaking for my son.
Tuesday, April 2, 2013
Autism Awareness Day
Autism has led me down a path and on a journey that I never could have imagined. It has shown me great sorrow and great joy, and strengthened my faith in love, determination, and honestly, science. I feel like I was able to pull my son back through to me somehow before I completely lost him. I never thought that I would ever hear the words "I love you, Mama" from him but now I do everyday. We stil...l have challenges ahead, but I wouldn't change one step of this journey because it led me to where we are today. Joey made me a Mom the day he was born and challenged me to be the best parent that I can be over the last 8 years. Everything he does amazes me because I never thought that he would have friends and play dates, be a part of a sports team, be mainstreamed with typical kids in school, laugh at my jokes and imitate my sarcasm, show concern for others, and even have a conversation with me. Some parents take those things for granted, and even think I'm weird because I marvel at everything he does. But if they could only understand that just a few years ago, I never thought any of these things were possible. And then I found an amazing place called SARRC and our journey began...
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