As some of you know, researchers have yet to find causes for ASD. Most recently, they have pinpointed specific genes that may contribute, but it is so complex that the numbers I have been seeing are up to 20 genes that may be involved. In addition to that, there has been little funding given to researchers in this area despite the overwhelming number of children that are now being diagnosed with an ASD. Personally, I feel that the reason statistics are rising is due to the educating of parents and caregivers to recognize the signs of an ASD. I believe that there are many elderly and middle-aged adults that also exhibit symptoms of an ASD, but due to little knowledge and probably some denial from older generations, they were labeled as "slow" or "shy" as children or may have been diagnosed with Mental Retardation, as that seems to have been the catch-all diagnosis in the past. These are just my opinions based off of my own work experience, education, and personal research and in no way do I consider myself an expert!
I am not going to say where I feel Brycen falls on the spectrum, because that is for the Autism team in IA City to determine. I do not feel it is a parent's job to "diagnose" a child themselves...a parent's job is to educate themselves and others as well as do anything possible to support and provide treatment for their child. Some people have wondered why a family physician or a pediatrician do not diagnose Autism Spectrum Disorders...good question as we frequently see family physicians/pediatrician's are able to diagnose many other disorders such as ADD. The reason for this is that ASD's are very complex and every child exhibits different symptoms...no two children are alike in this disorder, so it takes a team of specialists to gather information and make observations to give an accurate diagnosis that fits that child's specific symptoms and therefore, every child's treatment plan is also different.
There is no cure for Autism Disorders, nor are there any treatments that can reverse the symptoms a child exhibits. There are also no medications a child can be given to treat the Autism. Many children that are diagnosed with an ASD may also be diagnosed with ADD, ADHD, or OCD as it seems there is a very high correlation between these and Autism, and the child may be put on medication to assist with alleviating the symptoms of ADD/ADHD/OCD, but this medication is not meant to treat the Autism. This is the reason Autism professionals and advocates are working hard to educate parents and caregivers. The earlier a child is diagnosed with the disorder, the earlier various behavioral, speech, occupational therapy, etc can be started and it is stressed that early intervention may help a child to recover from some of the symptoms, such as they may learn to read/write/speak on the same level as other children their age.
I have attached two links to the Autism Speaks website to pages that I feel contain very important background information about ASD.
http://www.autismspeaks.org/whatisit/index.php
http://www.autismspeaks.org/whatisit/faq.php
Monday, June 29, 2009
Sunday, June 28, 2009
Living by a routine
The kids and I returned home today from a short trip across the state to a friend's wedding. That means that the last 3 days have been nothing close to our normal routine...and surprisingly we only hit a few snags along the way.
If you know our family, you know that our life revolves around a routine. Not only do my children, especially Brycen, thrive on routine, but I feel that every child needs at least some part of the day that they know stays the same. The routine also allows me to set aside certain times for me to get some work done (easier said than actually done on most days) as well as know when I will get a much-deserved break some days!
Of course when we travel, the routine is pretty much thrown out the window...except meal times (and usually nap time) which I work hard to ensure are as close as possible to the normal routine of home. I have run across some people over the last year that have seemed frustrated with the fact that Brycen is used to eating or napping at certain times, and sometimes that may mean we cannot participate in a certain activity if it is at one of those times. But those are the things we sacrifice for our children and meeting their basic needs will always be more important than activities.
This is a rundown of how much I have to prepare for a couple days of travel, hence a change in routine. I always, always have snacks/juice with me whenever we are traveling outside of Storm Lake city limits. There is also very limited times of departure that work with Brycen's schedule (Aubree can adapt much easier to changes than Brycen obviously)...we either leave first thing in the morning, immediately following lunch (which is around 11:15/11:30), or immediately following supper (which is 5:00/5:30ish). After supper is a last resort for our family, and is usually used only when we have to leave after Mike is off work and it is pertinent that we leave that day and not the next morning. Sometimes I do not know what time we will leave until the night before or the morning of departure as I have to weigh out how Brycen slept that night, the mood he is in, and other factors. I also have to plan for any meals on the road, as we do not have the financial means to just run through a drive-thru when it is most convenient as most people do when they are traveling.
For Kenzie's wedding this weekend, it was necessary that Brycen nap in the car on the way there, which is not usually a first choice as he doesn't sleep as long as he needs to when we are driving, but it is doable. I also planned a little window of time for when we arrived to allow him to walk around to get rid of energy pent up from sitting in a carseat for a couple hours. I always have a diaper bag full of snacks and quiet toys to keep him occupied during church-type events. I had determined that the dinner probably wouldn't be served until well after his 5:00 window and of course I was trying to prevent melt-downs, so I had a lunchable packed in case it was needed. I also packed some of the bribery items that I frequently need for Brycen...a baggie of M&M's and extra sippy of juice. Of course, despite all of this planning, it never goes as I would like...but I guess it went better than I really expected!
If you know our family, you know that our life revolves around a routine. Not only do my children, especially Brycen, thrive on routine, but I feel that every child needs at least some part of the day that they know stays the same. The routine also allows me to set aside certain times for me to get some work done (easier said than actually done on most days) as well as know when I will get a much-deserved break some days!
Of course when we travel, the routine is pretty much thrown out the window...except meal times (and usually nap time) which I work hard to ensure are as close as possible to the normal routine of home. I have run across some people over the last year that have seemed frustrated with the fact that Brycen is used to eating or napping at certain times, and sometimes that may mean we cannot participate in a certain activity if it is at one of those times. But those are the things we sacrifice for our children and meeting their basic needs will always be more important than activities.
This is a rundown of how much I have to prepare for a couple days of travel, hence a change in routine. I always, always have snacks/juice with me whenever we are traveling outside of Storm Lake city limits. There is also very limited times of departure that work with Brycen's schedule (Aubree can adapt much easier to changes than Brycen obviously)...we either leave first thing in the morning, immediately following lunch (which is around 11:15/11:30), or immediately following supper (which is 5:00/5:30ish). After supper is a last resort for our family, and is usually used only when we have to leave after Mike is off work and it is pertinent that we leave that day and not the next morning. Sometimes I do not know what time we will leave until the night before or the morning of departure as I have to weigh out how Brycen slept that night, the mood he is in, and other factors. I also have to plan for any meals on the road, as we do not have the financial means to just run through a drive-thru when it is most convenient as most people do when they are traveling.
For Kenzie's wedding this weekend, it was necessary that Brycen nap in the car on the way there, which is not usually a first choice as he doesn't sleep as long as he needs to when we are driving, but it is doable. I also planned a little window of time for when we arrived to allow him to walk around to get rid of energy pent up from sitting in a carseat for a couple hours. I always have a diaper bag full of snacks and quiet toys to keep him occupied during church-type events. I had determined that the dinner probably wouldn't be served until well after his 5:00 window and of course I was trying to prevent melt-downs, so I had a lunchable packed in case it was needed. I also packed some of the bribery items that I frequently need for Brycen...a baggie of M&M's and extra sippy of juice. Of course, despite all of this planning, it never goes as I would like...but I guess it went better than I really expected!
Wednesday, June 24, 2009
"Welcome to Holland"
As a professional in the Human Service field, I had always feared something may be wrong with my children when I was pregnant with them. But once they both were born and I was able to see them, hear them cry, feel them breathe, and count their precious fingers and toes, the thought left my mind completely. They were both born healthy despite a different complication with each pregnancy. Then when Brycen was not crawling or walking by the time he turned a year old, the thought once again crossed my mind but was eased by his doctor, research I did, and then went away completely when he began crawling at 12 1/2 months and walking at 17 months (still within the typical range). We went almost another year before the thought of an actual disability crossed my mind again...but this thought was here to stay. Of course I had hope...and I still have hope that Brycen will be one of the children with an ASD that show tremendous progress and eventually "recover" to the point that he may not even meet the criteria for an ASD! We will always have hope...but in the meantime, one of the reasons of this blog is so others can see the emotions we are dealing with having a child with special needs. Here is a "story" written by a Mom of a child with special needs...most people that have worked in my field have read this story before as it is a very popular story to share with those who work with the families of children/adults affected by disabilities. For those of you who read this for the first time...here is a glimpse into how we are feeling as we grasp the way our family's life is changing. http://www.our-kids.org/Archives/Holland.html.
Where are we now?
I want to apologize now for what will probably be very lengthy posts...I love to write and I think this is going to turn into a great therapy for myself on those days that are very trying!
It is June 24, 2009 and Brycen will turn 3 years old in exactly 1 month. He has a handful of single words, 2 signs, and a couple 2 word phrases...and of course babbling that we try to decipher every day. About a month ago, AEA rated him at a 16 month old level...do the calculations...that is less than half of his actual age! His "odd" behaviors are pretty much a normal part of the day now...opening and closing all the drawers in the kitchen that are not yet child proofed, shuffling/wrestling his toys around, laying on the floor pushing his tractors/trucks back and forth, throwing toys, jumping up and down while flapping his hands, grunting when he wants something, playing with his hair continuously, and so many more. His aggressive behaviors are getting worse each week...spitting and blowing bubbles when he is unhappy or mad that he isn't getting what he wants, hitting us or his sister, throwing temper tantrums on the floor and throwing/breaking toys.
Last Wednesday, I took Brycen to Child Health Speciality Clinics in Fort Dodge for his initial evaluation. We came home with a most likely confirmation that Autism is the correct diagnosis and of course more questionnaires and profiles to fill out for the Iowa City specialist. I met with his educational team on Thursday for his IEP for school in the fall. Though the services they provide won't change with a medical diagnosis, they are putting him in the Mild-Moderate Autism category from the profiles we filled out for them and the observations they have made over the months. Yesterday, I received a call from U of I hospitals to set up his final evaluation/observing of him. They can't fit him in until Monday, August 31 which is 9 weeks away...though we know getting into a specialist can sometimes take months, so 9 weeks is probably very good. He will be seeing an entire team that includes a physician, speech pathologist, psychologist, and some others for about 5 hours that day. This team will determine the actual medical diagnosis (Autism is a very large category in Developmental disorders, so they need to determine what criteria he meets under Autism Spectrum Disorders for the exact diagnosis) and help with devising a treatment plan that works best for his needs and personality. Through this phone call, I also learned that part of the appointment is considered educational and our insurance company most likely won't cover the cost of that portion...$520! I have yet to call the health insurance company about coverage for the rest of the appt, but I did notice on our benefits page that Autism disorders are covered under the Mental Health section, so the medical part of the appt should be covered...though I will still call them to confirm this for my own piece of mind.
Of course Brycen's health comes first, so we will pay anything and do anything we need to to ensure he is receiving the best treatment for him! We learn more and more each day about the sacrifices parents make for their children...and we also learn that it is all worth it!
It is June 24, 2009 and Brycen will turn 3 years old in exactly 1 month. He has a handful of single words, 2 signs, and a couple 2 word phrases...and of course babbling that we try to decipher every day. About a month ago, AEA rated him at a 16 month old level...do the calculations...that is less than half of his actual age! His "odd" behaviors are pretty much a normal part of the day now...opening and closing all the drawers in the kitchen that are not yet child proofed, shuffling/wrestling his toys around, laying on the floor pushing his tractors/trucks back and forth, throwing toys, jumping up and down while flapping his hands, grunting when he wants something, playing with his hair continuously, and so many more. His aggressive behaviors are getting worse each week...spitting and blowing bubbles when he is unhappy or mad that he isn't getting what he wants, hitting us or his sister, throwing temper tantrums on the floor and throwing/breaking toys.
Last Wednesday, I took Brycen to Child Health Speciality Clinics in Fort Dodge for his initial evaluation. We came home with a most likely confirmation that Autism is the correct diagnosis and of course more questionnaires and profiles to fill out for the Iowa City specialist. I met with his educational team on Thursday for his IEP for school in the fall. Though the services they provide won't change with a medical diagnosis, they are putting him in the Mild-Moderate Autism category from the profiles we filled out for them and the observations they have made over the months. Yesterday, I received a call from U of I hospitals to set up his final evaluation/observing of him. They can't fit him in until Monday, August 31 which is 9 weeks away...though we know getting into a specialist can sometimes take months, so 9 weeks is probably very good. He will be seeing an entire team that includes a physician, speech pathologist, psychologist, and some others for about 5 hours that day. This team will determine the actual medical diagnosis (Autism is a very large category in Developmental disorders, so they need to determine what criteria he meets under Autism Spectrum Disorders for the exact diagnosis) and help with devising a treatment plan that works best for his needs and personality. Through this phone call, I also learned that part of the appointment is considered educational and our insurance company most likely won't cover the cost of that portion...$520! I have yet to call the health insurance company about coverage for the rest of the appt, but I did notice on our benefits page that Autism disorders are covered under the Mental Health section, so the medical part of the appt should be covered...though I will still call them to confirm this for my own piece of mind.
Of course Brycen's health comes first, so we will pay anything and do anything we need to to ensure he is receiving the best treatment for him! We learn more and more each day about the sacrifices parents make for their children...and we also learn that it is all worth it!
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