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!
Saturday, January 23, 2016
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"!
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