I am so sad. I love Jack so incredibly much. To learn, to try to accept that Jack has a lifelong disability.... I am devastated and in an indescribable state of pain and grief.
Autism is believed to be an autoimmunde disorder that prevents the brain from working properly.
Friday, June 1, 2012
Saturday, May 26, 2012
Why did this happen?
I may never get the answers I want in regards to "Why? Why did this happen to Jack?"
I do know some things:
First: I had a healthy, full-term pregnancy. I followed all the recommended advice for pregnant women. Paul and I were healthy parents.
Second: Jack was born - beautiful, strong and healthy. I do not believe Jack was born with autism.
Third: Jack was developing normaly, on schedule.... and then something happened. Something went wrong?
What?
I asked my doctors about vaccines. I asked even while I was pregnant. I was poo-pooed. Told it was nothing to worry about.
I wish I wouldn't have given Jack the vaccines. Maybe people don't like to hear that. But its true. Knowing what I know now... Understanding my family history, Paul's family history... I think I should have received better counseling from the medical community. Yes - Jack's family has a history of immunity and neuoroligical disorders. I think Jack could have had a predisposition... and once so many super strong vaccines hit his body before the age of 2.... Jack's health history took a turn. I love my child so much - I would have done anything to have prevented this.
I wish I would have been counseled and would have known more about alternative vaccination schedules.
I'm not the only one who thinks this. Read the below thoughtful comments from Jenny McCarthy:
http://articles.cnn.com/2008-04-02/us/mccarthy.autsimtreatment_1_autism-evan-hannah-poling?_s=PM:US
Many people aren't aware that in the 1980s our children received only 10 vaccines by age 5, whereas today they are given 36 immunizations, most of them by age 2. With billions of pharmaceutical dollars, could it be possible that the vaccine program is becoming more of a profit engine then a means of prevention?
We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role. If we are going to solve this problem and finally start to reverse the rate of autism, we need to consider changing the vaccine schedule, reducing the number of shots given and removing certain ingredients that could be toxic to some children.
We take into account that some children have reactions to medicines like penicillin, for example, yet when it comes to vaccines we are operating as if our kids have a universal tolerance for them. We are acting like ONE SIZE FITS ALL. That is, at the very least, a huge improbability.
Even if the CDC is not convinced of a link between vaccines and autism, changing the vaccine schedule should be seriously considered as a precautionary measure. (If you would like to see some ideas for alternative schedules, check out http://generationrescue.org.)
We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!
I do know some things:
First: I had a healthy, full-term pregnancy. I followed all the recommended advice for pregnant women. Paul and I were healthy parents.
Second: Jack was born - beautiful, strong and healthy. I do not believe Jack was born with autism.
Third: Jack was developing normaly, on schedule.... and then something happened. Something went wrong?
What?
I asked my doctors about vaccines. I asked even while I was pregnant. I was poo-pooed. Told it was nothing to worry about.
I wish I wouldn't have given Jack the vaccines. Maybe people don't like to hear that. But its true. Knowing what I know now... Understanding my family history, Paul's family history... I think I should have received better counseling from the medical community. Yes - Jack's family has a history of immunity and neuoroligical disorders. I think Jack could have had a predisposition... and once so many super strong vaccines hit his body before the age of 2.... Jack's health history took a turn. I love my child so much - I would have done anything to have prevented this.
I wish I would have been counseled and would have known more about alternative vaccination schedules.
I'm not the only one who thinks this. Read the below thoughtful comments from Jenny McCarthy:
http://articles.cnn.com/2008-04-02/us/mccarthy.autsimtreatment_1_autism-evan-hannah-poling?_s=PM:US
Many people aren't aware that in the 1980s our children received only 10 vaccines by age 5, whereas today they are given 36 immunizations, most of them by age 2. With billions of pharmaceutical dollars, could it be possible that the vaccine program is becoming more of a profit engine then a means of prevention?
We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role. If we are going to solve this problem and finally start to reverse the rate of autism, we need to consider changing the vaccine schedule, reducing the number of shots given and removing certain ingredients that could be toxic to some children.
We take into account that some children have reactions to medicines like penicillin, for example, yet when it comes to vaccines we are operating as if our kids have a universal tolerance for them. We are acting like ONE SIZE FITS ALL. That is, at the very least, a huge improbability.
Even if the CDC is not convinced of a link between vaccines and autism, changing the vaccine schedule should be seriously considered as a precautionary measure. (If you would like to see some ideas for alternative schedules, check out http://generationrescue.org.)
We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!
Autism Service Dog
While I am excited to get Jack into an intensive autism program - I am also kind of sad because this is not the childhood I had imagined for him. Its going to be hard for Jack. I hope and believe it will be worth it. I sure am going to miss him though. The idea is that Jack will be going to a center for 40 hours a week and it will be quite a commute for him.
I've been reading about autism service dogs and the benefits they bring not only for the autistic child but also for the whole family. I'm thinking that it is going to be a HUGE deal when Jack graduates from his ABA program - hopefully in about 3 years or so. I am thinking that when Jack graduates - a canine service dog may be the best graduation present for him. I am going to
do this for Jack when he turns 5/graduates from ABA. Sounds like a great thing
for him and our whole family.
Siblings
When a child with autism has a Service Dog, this fact can not only mean less work for the parents, it can mean less work for the siblings. Siblings of an autistic child often become what psychologists refer to as "The Little Parent", behaving more like a care-giver than a child. When the autistic child has a Service Dog, though, their siblings feel less pressure to constantly interact and take care of their disabled sibling.
There are several services that a trained Autism Service Dog can provide:
When a child with autism has a Service Dog, this fact can not only mean less work for the parents, it can mean less work for the siblings. Siblings of an autistic child often become what psychologists refer to as "The Little Parent", behaving more like a care-giver than a child. When the autistic child has a Service Dog, though, their siblings feel less pressure to constantly interact and take care of their disabled sibling.
There are several services that a trained Autism Service Dog can provide:
- The Service Dog can be a "safety dog", which is
helpful if the person with autism often runs off. The child is tethered to the
dog and the dog becomes a protector of sorts for the child.
- Sometimes this task is more oriented towards finding the child when they run off, in which case the Service Dog is usually referred to as "Search and Rescue". See our page onpreventing wandering off.
- These dogs also serve as a “social ice breaker”
because other people are often attracted to a dog and will interact more readily
with the person. These additional avenues for social interaction acceptance can
be extremely meaningful. For autistic children, often social challenges are one
of the worst symptoms, and the dog creates a social conduit for interacting with
others.
- Additionally, often children with autism are themselves much more comfortable interactive when they're around the dog.
- Alerting toseizures.
- The Service Dog can interrupt the behavior of:
- PICA (impulsive eating of non-food items)
- Self-stimulation, such as slapping the face
- Self-harming
- Helping with refusal to speak:
- The dog maintains eye contact when child tries to speak
- The dog responds to verbal commands
- Adults and other children may engage with the the child by paying attention to the dog (also helps with social skills)
- An Autism Service Dog can also assist with emotional, behavioral and sensory challenges, and be with the person 24 hours a day. The dog facilitates sensory integration and calming, helping make melt-downs more manageable (many families cannot easily manage public outings without this method of calming the child). See our pages onpromoting empathy,the Service Dog as educational tool,the therapeutic effects of an Autism Service Dog , andextra benefits.
Wednesday, May 23, 2012
How am I doing?
People ask me "How are you doing?" I'm never too sure if they really want to know the answer to their question. In part - that's why I created this blog. So that you could see a snippet, a sliver of how I am doing and what is going on. I also created this blog to share an awareness of Jack's journey and too hopefully create some education on autism.
How am I doing?
I guess I am doing okay - for a mother who has just received the devastating news that her son has a neruological disorder called autism. I'm not "okay", it is an "okay - with a HUGE qualifier". What does that qualifier mean? It means that I am sad, scared, feeling guilty, anxious, nervous - I pretty much feel every single emotion all the time. I'm worried. I'm really worried about Jack. I'm worried about my family.
What do I know for sure?
I know for sure that I love Jack so very much. I love him completely and utterly. I am thankful for Jack.
I am sad. I am sad that Jack has had a hard life. He has had sickness - croup, pneuomonia, chicken pox, ear infections, flu, diarrhea, etc. But even more than the physical sickness - Jack has been unhappy. I am sad that everything will be harder for Jack. Learning language will be extremely difficult for Jack, it will be a struggle. Learning social skills and expectations will be harder for Jack. Learning gross motor skills and fine motor skills will be harder for Jack. Learning to eat healthy will be harder for Jack. Autism impacts the whole person - so pretty much everything will be harder for Jack. That makes me sad. Its very hard to watch and to know that your child is struggling every day.
I am scared. I'm pretty much scared of this world. One thing scares me more than anything. Time. Time. Time. I am 33, Jack is 2.5 (today!). I am scared to think about the future
How am I doing?
I guess I am doing okay - for a mother who has just received the devastating news that her son has a neruological disorder called autism. I'm not "okay", it is an "okay - with a HUGE qualifier". What does that qualifier mean? It means that I am sad, scared, feeling guilty, anxious, nervous - I pretty much feel every single emotion all the time. I'm worried. I'm really worried about Jack. I'm worried about my family.
What do I know for sure?
I know for sure that I love Jack so very much. I love him completely and utterly. I am thankful for Jack.
I am sad. I am sad that Jack has had a hard life. He has had sickness - croup, pneuomonia, chicken pox, ear infections, flu, diarrhea, etc. But even more than the physical sickness - Jack has been unhappy. I am sad that everything will be harder for Jack. Learning language will be extremely difficult for Jack, it will be a struggle. Learning social skills and expectations will be harder for Jack. Learning gross motor skills and fine motor skills will be harder for Jack. Learning to eat healthy will be harder for Jack. Autism impacts the whole person - so pretty much everything will be harder for Jack. That makes me sad. Its very hard to watch and to know that your child is struggling every day.
I am scared. I'm pretty much scared of this world. One thing scares me more than anything. Time. Time. Time. I am 33, Jack is 2.5 (today!). I am scared to think about the future
Tuesday, May 22, 2012
May 22, 2012
Today was another big deal day. So many days have felt like "big deals" lately. But today was special. Today we received the evaluation from the school district. Today was a big deal to me because it was the suggestion from Jack's preschool director to reach out to the school district that opened my eyes to the medical/neurological crisis my son has been in. That was 41 days ago - April 12th. I am forever grateful to the director from Jack's school for reaching out to me in a compassionate, caring manner and for helping me to help my son.
The school evaluation was 17 pages long - single spaced. I haven't read it yet. I've skimmed some parts. Similar to the medical diagnosis (14 pages long - single spaced) - I know the information, I know the test results are bad. I guess it was new to learn what percentiles Jack would be in compared to typically developing peers. Sometimes Jack was in the bottom 1%. Sometimes it was the bottom 6% or bottom 7%. It is hard news to hear.
It was also hard to hear that Jack also has gross motor development needs. Gross motor is an area of strength for Jack - but he is still behind his typically developing peers - just not as far behind as he is in other areas. I know this was especially difficult for Paul to hear. And its been on his mind all day today. Paul is a good father and I know that Paul is really trying to be there for his family, for Jack and that Paul is trying more than ever.
What can we do for the gross motor? Our goal is to spend time outside, at gyms, Pump It Up, Sky Zone, whatever. We need to expose Jack to new activities and always work on gross motor skills. I'll plan on keep bringing Jack to Nora's soccer - those are great opportunities for us to play at the playground and meet other children. And I am SOOOOOOOOOOOOOOO excited to begin swim this Thursday. Hooray!
So I haven't read the medical reports or school reports - but I have been the one who has provided the majority of the content for the reports and I have sat through all the report-outs. At this time - I'm still not comfortable sharing the reports. But I will share this little snippet from the school report:
Jack's Skills/Behaviors
STRENGTHS:
- Supportive family
- Enjoys gross motor movement of his choice
- Functional mobility; able to access items in his environement
- Emerging verbal imitation sklls
- Uses nonverbal strategies to communciate wants and needs with emerging use of single words
- Enjoys social interactions that are of interests to him
NEEDS
- Increase gross motor skills, including imitation
- Increae ability to participate in adult directed activities
- Increase ability to find named objects and complete 1 and 2 step activities
- Increase functional expressive vocabulary to communicate his wants and needs
- Increase use of functional expressive vocabular in response to others
- Increase his coping skills
The school evaluation was 17 pages long - single spaced. I haven't read it yet. I've skimmed some parts. Similar to the medical diagnosis (14 pages long - single spaced) - I know the information, I know the test results are bad. I guess it was new to learn what percentiles Jack would be in compared to typically developing peers. Sometimes Jack was in the bottom 1%. Sometimes it was the bottom 6% or bottom 7%. It is hard news to hear.
It was also hard to hear that Jack also has gross motor development needs. Gross motor is an area of strength for Jack - but he is still behind his typically developing peers - just not as far behind as he is in other areas. I know this was especially difficult for Paul to hear. And its been on his mind all day today. Paul is a good father and I know that Paul is really trying to be there for his family, for Jack and that Paul is trying more than ever.
What can we do for the gross motor? Our goal is to spend time outside, at gyms, Pump It Up, Sky Zone, whatever. We need to expose Jack to new activities and always work on gross motor skills. I'll plan on keep bringing Jack to Nora's soccer - those are great opportunities for us to play at the playground and meet other children. And I am SOOOOOOOOOOOOOOO excited to begin swim this Thursday. Hooray!
So I haven't read the medical reports or school reports - but I have been the one who has provided the majority of the content for the reports and I have sat through all the report-outs. At this time - I'm still not comfortable sharing the reports. But I will share this little snippet from the school report:
Jack's Skills/Behaviors
STRENGTHS:
- Supportive family
- Enjoys gross motor movement of his choice
- Functional mobility; able to access items in his environement
- Emerging verbal imitation sklls
- Uses nonverbal strategies to communciate wants and needs with emerging use of single words
- Enjoys social interactions that are of interests to him
NEEDS
- Increase gross motor skills, including imitation
- Increae ability to participate in adult directed activities
- Increase ability to find named objects and complete 1 and 2 step activities
- Increase functional expressive vocabulary to communicate his wants and needs
- Increase use of functional expressive vocabular in response to others
- Increase his coping skills
Sunday, May 20, 2012
May 20, 2012
We went to an ECSE (Early Childhood Special Education) Family Night Out at the Maple Grove Community Center. I consider the night out a success. Jack and Nora had fun.. and Paul came... met teachers and other parents who were very informative, educated, and compassionate about autism. Paul got to see... like I did at the Pump It Up Sensory Night.... that these are really good events for our family. An outsider walking probably wouldn't even know that these are special needs kids. And I guess that's the thing... you've got to know the kids... to know the needs... to make the difference.
We continue to learn more and more about autism. I'll write more about some quick ways to explain autism later. i am quite tired at the moment.
One cool thing I learned tonight... is that Jack gets to go free to Sky Zone any time. How awesome is that? So if you're in the area.. and want to do something with Jack... Sky Zone is a fun option. Jack excells at places like Pump It Up and Sky Zone. They are places where his strengths shine. It feels good to find things that Jack likes - and that he can enjoy doing with others.
I need to write that today was a good day for Jack. We kept busy. We listened to music, visited Sally and Tim's, got to see Jane, John and Jordan, played with dogs, played in the rain, wore rain boots (andy kind of boots for the first time), toured the RV (honked the horn in the RV - twice), went to Family Night Out, grocery shopped at cub. And Jack ate peanuts (first time ever) and took an apple - put it to his mouth and tried to take a bite. Jack ultimately decided he didn't want to eat the apple.... but just touching the apple - let alone bringing the apple to his mouth - was HUGE!
Many thanks to Aunt Jane for sharing information about seizures with me today. I have some questions out to our doctor tonight and am awaiting more information. There have been two specific occassions where Paul and I wonder if Jack may have had a petit mal seizure. Once when Jack had the chicken pox and Jack exhibited a strange staring spell (we went to Children's that night)... and another time when I got a call from his daycare (back in spring 2011) saying that Jack's lips had briefly turned blue and that he had shook all over, but when I picked up Jack he was content and showed no signs of anything wrong... I had called the nurseline - but they advised me to just continue to closely observe Jack.....
We continue to learn more and more about autism. I'll write more about some quick ways to explain autism later. i am quite tired at the moment.
One cool thing I learned tonight... is that Jack gets to go free to Sky Zone any time. How awesome is that? So if you're in the area.. and want to do something with Jack... Sky Zone is a fun option. Jack excells at places like Pump It Up and Sky Zone. They are places where his strengths shine. It feels good to find things that Jack likes - and that he can enjoy doing with others.
I need to write that today was a good day for Jack. We kept busy. We listened to music, visited Sally and Tim's, got to see Jane, John and Jordan, played with dogs, played in the rain, wore rain boots (andy kind of boots for the first time), toured the RV (honked the horn in the RV - twice), went to Family Night Out, grocery shopped at cub. And Jack ate peanuts (first time ever) and took an apple - put it to his mouth and tried to take a bite. Jack ultimately decided he didn't want to eat the apple.... but just touching the apple - let alone bringing the apple to his mouth - was HUGE!
Many thanks to Aunt Jane for sharing information about seizures with me today. I have some questions out to our doctor tonight and am awaiting more information. There have been two specific occassions where Paul and I wonder if Jack may have had a petit mal seizure. Once when Jack had the chicken pox and Jack exhibited a strange staring spell (we went to Children's that night)... and another time when I got a call from his daycare (back in spring 2011) saying that Jack's lips had briefly turned blue and that he had shook all over, but when I picked up Jack he was content and showed no signs of anything wrong... I had called the nurseline - but they advised me to just continue to closely observe Jack.....
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