I wanted to take a few paragraphs to re-introduce or update my purpose, my preface to my blog.
I started several years ago with a load of thoughts floating around in my head my entire purpose for writing was to accomplish one goal: If on single pierce of advise or information could/would help one other family my job was complete! I think I have done that .I have no intention of stopping and will continue to post..however I go thru rough patches where I have lots of things I want to write about yet struggle to get them posted and other times where I want to write yet feel the material is either not exactly what I want it to be or I can't co structure the post in an effective way...hence gaps.
Whenever I am introducing someone to my blog I always explain it as just a mom and her observations...Iam not trying to convince someone my way is the best way, rather I ran into a situation...this is how I observed and assessed it and this is what I did about it....from that I hope that each person can take that and mold it into what works for them and their family...
There is also the persons who are reading for informational purposes teachers or other professional as well as a few friends or people who are affected by Autism somewhere in their family or community and simply read to hear another viewpoint.
My blog is simple and easy and not a professional blog...it has what I call short story status..a few paragraphs on one topic perhaps how two or more things come together. I also write or comment on things like meds,scripts, school districts, dealing with agencies and programs, recreational challenges and professionals.
There is a search box you can input words to find things that pertain to what you might want to read.I have about 400 posts over the course of several years. I make every effort not to repeat myself yet some topics are far more vast and complicated and sometimes draw on different points of view .
I haven't promoted my blog but use it as a signature for some posts on the Internet....I would love for it to generate conversation and even comments or a community of people who would learn from each other. I also feel it serves as an outlet for me to vent and has positive effect on my frame of mind as it serves me to work out the kinks sometimes when I can't seem to find an answer
Most importantly I hope it serves to help anyone who might be involved with my son and helps with insight on our daily lives, struggles and challenges. Every individual is different and has different needs;the common denominator is autism. I only try to focus on our journey and hope somehow it is of use to someone else...I hope anyone who views this blog will please feel free to tell others
about it as I feel it has value to those of us who walk this path.
Monday, March 21, 2016
Saturday, February 20, 2016
Treat Me As An Individual
This is a subject that is very important ..yet quiet touchy.....There have been many discussion and posts on Facebook about how special needs kids just want to be included..to be one of the kids....etc.
This has many facets and opinions on how it should occur. As our "special kids" go thru school there are suggestions, classes and activities to give our kids experience and opportunity to "blend"in the community. Mostly thru the special Ed classes with outings to places like the dollar store or a fast food restaurant,a trip to a fair or perhaps even a movie...HOWEVER; it is not done with typical children for the most part. It is a part of the daily or weekly schedule of the classroom. Ok : I'm happy that our kids are getting exposure and practical experience and hopefully some enjoyment not to mention visability in the community. The biggest issue I have is this JUDGEMENT. We all have seen it and we all have thought it and whether we are parents of challenged kids or mere onlookers of the community : you pull up to a light and you notice a whole "passel of "chicks" with a few adults and it doesn't take but a split second to realize these are not typical kids. Nothing wrong with that BUT there is an immediate judgement. My point is this if the idea is to get these kids to blend in and then you send them out in a clan not with any other kids how can that be (I hate this word) NORMAL?
I understand my man/child is not typical and is challenged and I love all the kids he has had as classmates, "friends"or aqaintances..I also understand that a certain portion of his day or activities should include being with similar kids. The problem is that's all any school, work program or social program offers. I disagree. I do not want to offend any one and I certainly don't want others who have special needs children to think that my child is any better than theirs, my point is that these kids need to be treated as individuals and given opportunity to act and be viewed in a more natural setting. They need to be included as an individual for a birthday party or a bowling trip, to amusement park or a day at the beach! I'll concede that the disability can be challenging , daunting and perhaps overwhelming for a typical person to undertake yet I believe it is possible . The key is to develop relationships that are constant and regular so the comfort level is raised to a point where my kid is "manageable"for someone who may not be sure of themselves.
Again I get it a behavior can scare anyone and especially not knowing how to deal or handle it but the only way someone can learn is to,be around enough to experience it .
As our kids get older and leave school most of their social exposure goes down the tubes. They are not one to talk on the phone or have the need to bond with people and they become more and more isolated.Our job as parents is to everything we can to nurture relationships for our kids...yet there comes a time when you say I gotta cut the apron strings....I am quite sure my kid would love to do something like a movie without his Mom.
There are programs that are specifically for handicapped individuals. In many of the high schools there is what they call a Best Buddy Program which pairs typical kids with special needs for things like assemblies and pep rallies..or special occassions ...there is NO MODEL for after school ends. I've even checked into the Big Brothers and Big Sisters and they don't want typical kids that are over 17.
I guess what this post is about is another frustration I can't seem to solve. Young Adults are busy working , going to school and certainly worried about their appearance and really don't have much care about being "seen"with someone who might compromise their street cred. Sure you can and will have access to vendors who can be paid for being a coach or chaperone but again that's not really solving the problem, not to mention not all of us have the ability to lay out money for that kind of support.it just seems that this should be simpler than it is.
Many years ago a mom and mentor of mine said that if you find someone who is interested in your child and wants to spend time with them you do everything in your power to nurture that relationship;if you have to drive them, buy pizza , pay for movies make the phone calls to keep in touch..whatever it takes because they are rare. I can agree
All I can conclude is that our kids want to be a part of a "normal"life and treated as an individual , just like everyone else. If you find your self with an hour and you want to do something rewarding go find that kid in your neighborhood and take him/her for an Ice Cream or a bike ride..maybe to the local fishing hole...the parents would probably be thrilled but the man/child will be the one to benefit whether he can tell you or not!
This has many facets and opinions on how it should occur. As our "special kids" go thru school there are suggestions, classes and activities to give our kids experience and opportunity to "blend"in the community. Mostly thru the special Ed classes with outings to places like the dollar store or a fast food restaurant,a trip to a fair or perhaps even a movie...HOWEVER; it is not done with typical children for the most part. It is a part of the daily or weekly schedule of the classroom. Ok : I'm happy that our kids are getting exposure and practical experience and hopefully some enjoyment not to mention visability in the community. The biggest issue I have is this JUDGEMENT. We all have seen it and we all have thought it and whether we are parents of challenged kids or mere onlookers of the community : you pull up to a light and you notice a whole "passel of "chicks" with a few adults and it doesn't take but a split second to realize these are not typical kids. Nothing wrong with that BUT there is an immediate judgement. My point is this if the idea is to get these kids to blend in and then you send them out in a clan not with any other kids how can that be (I hate this word) NORMAL?
I understand my man/child is not typical and is challenged and I love all the kids he has had as classmates, "friends"or aqaintances..I also understand that a certain portion of his day or activities should include being with similar kids. The problem is that's all any school, work program or social program offers. I disagree. I do not want to offend any one and I certainly don't want others who have special needs children to think that my child is any better than theirs, my point is that these kids need to be treated as individuals and given opportunity to act and be viewed in a more natural setting. They need to be included as an individual for a birthday party or a bowling trip, to amusement park or a day at the beach! I'll concede that the disability can be challenging , daunting and perhaps overwhelming for a typical person to undertake yet I believe it is possible . The key is to develop relationships that are constant and regular so the comfort level is raised to a point where my kid is "manageable"for someone who may not be sure of themselves.
Again I get it a behavior can scare anyone and especially not knowing how to deal or handle it but the only way someone can learn is to,be around enough to experience it .
As our kids get older and leave school most of their social exposure goes down the tubes. They are not one to talk on the phone or have the need to bond with people and they become more and more isolated.Our job as parents is to everything we can to nurture relationships for our kids...yet there comes a time when you say I gotta cut the apron strings....I am quite sure my kid would love to do something like a movie without his Mom.
There are programs that are specifically for handicapped individuals. In many of the high schools there is what they call a Best Buddy Program which pairs typical kids with special needs for things like assemblies and pep rallies..or special occassions ...there is NO MODEL for after school ends. I've even checked into the Big Brothers and Big Sisters and they don't want typical kids that are over 17.
I guess what this post is about is another frustration I can't seem to solve. Young Adults are busy working , going to school and certainly worried about their appearance and really don't have much care about being "seen"with someone who might compromise their street cred. Sure you can and will have access to vendors who can be paid for being a coach or chaperone but again that's not really solving the problem, not to mention not all of us have the ability to lay out money for that kind of support.it just seems that this should be simpler than it is.
Many years ago a mom and mentor of mine said that if you find someone who is interested in your child and wants to spend time with them you do everything in your power to nurture that relationship;if you have to drive them, buy pizza , pay for movies make the phone calls to keep in touch..whatever it takes because they are rare. I can agree
All I can conclude is that our kids want to be a part of a "normal"life and treated as an individual , just like everyone else. If you find your self with an hour and you want to do something rewarding go find that kid in your neighborhood and take him/her for an Ice Cream or a bike ride..maybe to the local fishing hole...the parents would probably be thrilled but the man/child will be the one to benefit whether he can tell you or not!
Saturday, January 23, 2016
Water Under The Bridge
I have often wondered if having a Dakota a little later in life was a trigger or causation for Autism. I was healthy, active and emotionally ready and truthfully think that my age was an advantage.
I have actually written about the birth and delivery and feel that the extended labor and trauma was the starting piont for the diagnosis however who's to say that it didn't start at inception. No One will really know and for that matter until they find the cause no one really really ever know about their child and why autism came to "live" at their house in their child! So there comes a time when you just have to make peace with it; consider its a question that has no answer (at this time) and say "it's water under the bridge can't go back"
All of us at one time or another play the "what if....."scenario. Most the time we never arrive at a decisive answer. I have come to the
opinion that it's a waste of time, it causes a lot of hurt and heartache
and doesn't solve any problem. It's not just in the special needs community either .....I have seen many people ruin their lives over unresolved "what ifs". Somehow you gotta say there's no definitive answer or resolution AND move on . If you don't, the rest of your life will be stuck.
Its not easy to do and we all have moments of remorse,re-examination and doubt. We have to pull ourselves up by the bootstraps and get on with life! How will our lives or the lives of
others that connect with us benefit from the mire of doubt and
regret.
The one thing about Autism is it never lets you "sleep" from the moment of the diagnosis you hit the road running. Perhaps because there is no "pat"answer or maybe just because it's what you need to do for your kid and family. You will always search, investigate or read to see if this particular "thing"might be the one "thing" that can make life better. Will this work on my kid? Did others benefit?
Where can I get it? Is someone around here doing it AND having success?
I started this post with the intent to talk about age affecting autism but think I arrived at a different topic purely by accident. Guess my point is try not to beat yourself up on the "what ifs of life" because most of the time there is no answer or solution. Just try to embrace the situation, do the best your can,offer no apology for how you do things and most importantly TAKE NO PRISONERS...DO IT YOUR WAY!
I have actually written about the birth and delivery and feel that the extended labor and trauma was the starting piont for the diagnosis however who's to say that it didn't start at inception. No One will really know and for that matter until they find the cause no one really really ever know about their child and why autism came to "live" at their house in their child! So there comes a time when you just have to make peace with it; consider its a question that has no answer (at this time) and say "it's water under the bridge can't go back"
All of us at one time or another play the "what if....."scenario. Most the time we never arrive at a decisive answer. I have come to the
opinion that it's a waste of time, it causes a lot of hurt and heartache
and doesn't solve any problem. It's not just in the special needs community either .....I have seen many people ruin their lives over unresolved "what ifs". Somehow you gotta say there's no definitive answer or resolution AND move on . If you don't, the rest of your life will be stuck.
Its not easy to do and we all have moments of remorse,re-examination and doubt. We have to pull ourselves up by the bootstraps and get on with life! How will our lives or the lives of
others that connect with us benefit from the mire of doubt and
regret.
The one thing about Autism is it never lets you "sleep" from the moment of the diagnosis you hit the road running. Perhaps because there is no "pat"answer or maybe just because it's what you need to do for your kid and family. You will always search, investigate or read to see if this particular "thing"might be the one "thing" that can make life better. Will this work on my kid? Did others benefit?
Where can I get it? Is someone around here doing it AND having success?
I started this post with the intent to talk about age affecting autism but think I arrived at a different topic purely by accident. Guess my point is try not to beat yourself up on the "what ifs of life" because most of the time there is no answer or solution. Just try to embrace the situation, do the best your can,offer no apology for how you do things and most importantly TAKE NO PRISONERS...DO IT YOUR WAY!
Wednesday, January 6, 2016
A Few Thoughts on Medicine
Just had a blow out behavior this morning and it brought some observations on medicine and drugs for Autism as well as general "scripts" most all of us take for the flu or a cold...or other maladies. Each individual regardless of diagnosis has their own body chemistry and makeup. Although many of us use the same drugs or medications and usually don't have side effects or reactions..it not always that way. As has been stated a millions times Autism is a spectrum disorder each and every Autistic individual has unique traits and abilities as well as reactions to meds.
That being said Professionals will inherently put all of us in the same box because that's just how they are trained..If most people are ok with with a med why won't it work the same on our kids? many time they can be right and far be it from me to question a doc for the most part ..after all they have th training but what I possess is the 24/7 365 experience of my observations and assessment.
So here is the point of this post....this morning Dakota had a pretty good "blow out" didn't last a really long time but it was a GOOD ONE : screaming, crying, yelling at the TV, yanking and pulling on himself and me....now I have been attempting to reduce his dose of Abilify for many reasons but mostly because I just hate that he needs chemicals in his body everyday to help him cope with behaviors that come at random, unpredictably but that's the nature of the beast since you don't know
exactly when; then the meds become "preventative"....never the less.....last night he was coughing so I gave him prescription cough syrup WITH codeine. I cannot help but think that the codeine had something to do with him blowing up this morning. Can I prove it no, do I bet it true yes. Now the question remains do I give it to him again and wait for a reoccurrence? Well on one hand I should want to know definitatively that it was a reaction to the drug on the other hand do I want him or myself to experience another meltdown like this morning"HELL NO"......,.....talk about being between a rock and a hard place. Probably the doctor would insist it was unrelated, this is when I say walk a mile in my moccasins then tell me the same thing.
One last thought about this pharmaceutical stuff and I will "tap out" I do believe many years ago I posted something similar, I think it bears repeating:
Dakota was prescribed Risperidol. It was a great and effective drug for him and we had very little problem with it and its effectiveness. He initially started the drug at a tender age ..the start of puberty whe he was barely 5 feet tall and less than 100 pounds..the initial doseage was .25 mgs at AM and PM...as he grew and put on more weight the doctors were insistent he needed a higher dose. They kept wanting to increase it and I kept resisting. Finally I started to up the dose and I saw escalation in behavior. I put my foot down and told them it was gonna stay at 1 full mg or less a day because that was all he needed. They argued that it wouldnt be effective for his size and growth....I stuck to my guns and it turned out to be the right decision for him. I have since changed him not because I didn't think the med was effective, but simply because he had been taking it for so many years that I decided his body needed a change and/or rest. At least from that medication. He is currently taking Abilify and again I have reduced the dose and seem to have some success...
That being said Professionals will inherently put all of us in the same box because that's just how they are trained..If most people are ok with with a med why won't it work the same on our kids? many time they can be right and far be it from me to question a doc for the most part ..after all they have th training but what I possess is the 24/7 365 experience of my observations and assessment.
So here is the point of this post....this morning Dakota had a pretty good "blow out" didn't last a really long time but it was a GOOD ONE : screaming, crying, yelling at the TV, yanking and pulling on himself and me....now I have been attempting to reduce his dose of Abilify for many reasons but mostly because I just hate that he needs chemicals in his body everyday to help him cope with behaviors that come at random, unpredictably but that's the nature of the beast since you don't know
exactly when; then the meds become "preventative"....never the less.....last night he was coughing so I gave him prescription cough syrup WITH codeine. I cannot help but think that the codeine had something to do with him blowing up this morning. Can I prove it no, do I bet it true yes. Now the question remains do I give it to him again and wait for a reoccurrence? Well on one hand I should want to know definitatively that it was a reaction to the drug on the other hand do I want him or myself to experience another meltdown like this morning"HELL NO"......,.....talk about being between a rock and a hard place. Probably the doctor would insist it was unrelated, this is when I say walk a mile in my moccasins then tell me the same thing.
One last thought about this pharmaceutical stuff and I will "tap out" I do believe many years ago I posted something similar, I think it bears repeating:
Dakota was prescribed Risperidol. It was a great and effective drug for him and we had very little problem with it and its effectiveness. He initially started the drug at a tender age ..the start of puberty whe he was barely 5 feet tall and less than 100 pounds..the initial doseage was .25 mgs at AM and PM...as he grew and put on more weight the doctors were insistent he needed a higher dose. They kept wanting to increase it and I kept resisting. Finally I started to up the dose and I saw escalation in behavior. I put my foot down and told them it was gonna stay at 1 full mg or less a day because that was all he needed. They argued that it wouldnt be effective for his size and growth....I stuck to my guns and it turned out to be the right decision for him. I have since changed him not because I didn't think the med was effective, but simply because he had been taking it for so many years that I decided his body needed a change and/or rest. At least from that medication. He is currently taking Abilify and again I have reduced the dose and seem to have some success...
- I guess what the point of this excerpt is, that it reaffirms you have to listen to your own gut and not let "professionals"convince you to do something you feel is not the right fit for your child, for your family or for you....DO NOT BE INTIMDATED by a certificate or degree on the wall, they are human and do not have a crystal ball and they certainly don't live in your house and experience what you do....use your powers of observation and love for your child big or small to advocate when you feel something is off kilter.
Another New Year
As usual....I did not post as often as I expected ....
It has been an usually difficult past year...mostly for myself but life in general. My purpose for,this blog is specifically dealing with Autism and related stories, experiences and subjects however occasionally I veer of course and need to be much more focused and proactive...I hope that this year will bring good times and a renewed perspective on many aspects on life including Autism.
I really want to encourage those of you living with autism to take a deep breath and really appreciate the little things in life...like the smell of rain or freshly cut grass, perhaps how blue the sky is or the reflections in a puddle of water....often times when we have just reached overload and we think we have hit our limit its those small things that only take a minute or two, that allow us to not commit to the "funny farm"!
For those of you who don't live with this "crap" disorder my encouragement comes with a request to learn a bit more about autism, help a parent or caregiver in some small way.(like take their trash can in after trash has gone or even a friendly hello or phone call for a few minutes to let them know they are human), or simply be less "ready" to draw a conclusion about an individual that might be acting strangely because with percentages at 1in50 births now yielding an autistic diagnosis..it is very probable that you witness more incidents than you realize.
One example that comes to mind immediately is the other day Dak and I went to the pharmacy to pick up a couple of scripts; he has been sick since the day after Christmas...mind you this is a kid who has no motor skill to blow his nose or spit...much less have the typical ability to cover his mouth when he coughs. So its Kaiser and the frickin line to pick up scripts is worse than a line at Disneyland and it's filled with plenty of sick people many more sick than Dakota. He coughs and of course I try to remind him please cover your mouth....AND HERE COME ALL THE DIRTY LOOKS. One woman standing behind us heard me reminding him and she chimes in with "oh you can cough into your elbow". Look I understand we live in a world of Germ-o-phobes . People are freaked out about their personal space and I do not believe the lady was being necessarily rude, I just think she thought she was suggesting something that might work but without assessing the situation properly.Then there was another man who I can't seem to get a complete read on even now a couple of days later....I'm not sure if he was just sizing up Dakota or judging him but I felt his eyes on us the entire time we were in line. Ok so again I veer off topic; My point is just be aware befor passing an opinion.
I have great aspirations to share new stories and observations this upcoming New Year...
Many often develop after I read some of the Autism boards online....Infact most who have kids much younger than Dakota, who are struggling with things that we have already been thru.Although the solution may never be the same, often just being able to tell someone what you went thru and how you worked it out for your family will give them the creative sense to find the right "fix"!
It has been an usually difficult past year...mostly for myself but life in general. My purpose for,this blog is specifically dealing with Autism and related stories, experiences and subjects however occasionally I veer of course and need to be much more focused and proactive...I hope that this year will bring good times and a renewed perspective on many aspects on life including Autism.
I really want to encourage those of you living with autism to take a deep breath and really appreciate the little things in life...like the smell of rain or freshly cut grass, perhaps how blue the sky is or the reflections in a puddle of water....often times when we have just reached overload and we think we have hit our limit its those small things that only take a minute or two, that allow us to not commit to the "funny farm"!
For those of you who don't live with this "crap" disorder my encouragement comes with a request to learn a bit more about autism, help a parent or caregiver in some small way.(like take their trash can in after trash has gone or even a friendly hello or phone call for a few minutes to let them know they are human), or simply be less "ready" to draw a conclusion about an individual that might be acting strangely because with percentages at 1in50 births now yielding an autistic diagnosis..it is very probable that you witness more incidents than you realize.
One example that comes to mind immediately is the other day Dak and I went to the pharmacy to pick up a couple of scripts; he has been sick since the day after Christmas...mind you this is a kid who has no motor skill to blow his nose or spit...much less have the typical ability to cover his mouth when he coughs. So its Kaiser and the frickin line to pick up scripts is worse than a line at Disneyland and it's filled with plenty of sick people many more sick than Dakota. He coughs and of course I try to remind him please cover your mouth....AND HERE COME ALL THE DIRTY LOOKS. One woman standing behind us heard me reminding him and she chimes in with "oh you can cough into your elbow". Look I understand we live in a world of Germ-o-phobes . People are freaked out about their personal space and I do not believe the lady was being necessarily rude, I just think she thought she was suggesting something that might work but without assessing the situation properly.Then there was another man who I can't seem to get a complete read on even now a couple of days later....I'm not sure if he was just sizing up Dakota or judging him but I felt his eyes on us the entire time we were in line. Ok so again I veer off topic; My point is just be aware befor passing an opinion.
I have great aspirations to share new stories and observations this upcoming New Year...
Many often develop after I read some of the Autism boards online....Infact most who have kids much younger than Dakota, who are struggling with things that we have already been thru.Although the solution may never be the same, often just being able to tell someone what you went thru and how you worked it out for your family will give them the creative sense to find the right "fix"!
Thursday, December 24, 2015
Christmas Time.....
Traditionally I post about Christams time activities and how it affects our kids....
The sensory overload of sounds, sights and smells..not to mention the change of routine and schedules, traveling, visitors, school programs etc...we as "typical" people have to put our highest coping mechanisms in place, can you imagine what it must be like for our "kids"???
Many scoff it off as "it's that time of the year" and even many parents who have special needs children will power thru and even "coerce" their children to COPE......by reasoning that it's just part of life and the year. I can honestly say that this year inparticular has been extremely hard for me...be it age, health or emotional condition something's "in the air"!
I cannot fathom how it would feel to have autism and deal with all the "holidays" have to throw at us...
Christmas Eve is upon us and most of the craziness is passed so it should taper off. There will always be residule effects some that may stick around for a month or two and others that potentially will hold on for quite a bit longer.
if you are out and about and for some reason you see a person struggling with repetitious behavior or vocal stemming, chewing fingers, twisting hair, talking to themselves or completely withdrawn..just know you are probably near the world of autism and are witnessing coping skills.There will be parents or caregivers close by,give them a hug with your eyes.....I can't tell you how much that means to us....
For the moment Merry Christmas and here's to a New Year..chocked full of new adventures!
The sensory overload of sounds, sights and smells..not to mention the change of routine and schedules, traveling, visitors, school programs etc...we as "typical" people have to put our highest coping mechanisms in place, can you imagine what it must be like for our "kids"???
Many scoff it off as "it's that time of the year" and even many parents who have special needs children will power thru and even "coerce" their children to COPE......by reasoning that it's just part of life and the year. I can honestly say that this year inparticular has been extremely hard for me...be it age, health or emotional condition something's "in the air"!
I cannot fathom how it would feel to have autism and deal with all the "holidays" have to throw at us...
Christmas Eve is upon us and most of the craziness is passed so it should taper off. There will always be residule effects some that may stick around for a month or two and others that potentially will hold on for quite a bit longer.
if you are out and about and for some reason you see a person struggling with repetitious behavior or vocal stemming, chewing fingers, twisting hair, talking to themselves or completely withdrawn..just know you are probably near the world of autism and are witnessing coping skills.There will be parents or caregivers close by,give them a hug with your eyes.....I can't tell you how much that means to us....
For the moment Merry Christmas and here's to a New Year..chocked full of new adventures!
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