I rejoice Everytime I see Dakota make a small step of progress whether its conversational or concept and I thank my lucky stars that he is as functional as he is!!!Many especially those in the Autism world label him as high functioning and for those of us who live this disorder we know that labels are more for the parents than they are for the kids. As I discover more people with Autism who can express themselves one of the things that seems to ring true is that they look at autism being a part of who they are not something to fix.
I have found myself repeatedly asking if what I want for Dakota is what he wants for himself....you know the jargain about being typical and wanting typical experiences...Is more because that's what I think he needs or is more about what I think society thinks he needs ....
Recently this has become more prevalent in my mind as I see him becoming more and more reclusive and much less amicable towards participating every day activities that most young adults do...It hurts me to see him not want to bowl, or miniature golf, go to a movie or the mall...More so when I try to challenge him to do one of these things it becomes a trigger for escalation of behavior that is more than just a no ! It bothers me so severely that I find myself fighting tears trying not to let him know that it upsets me .He gets extremely vocal and screams at the top of his lungs mostly to "SHUT UP" even when I am not speaking...
My heart breaks because I feel he is missing a significant part of life and love by not doing some of these activities...but should my heart break ??? should I just say I like this and he likes that and that the way it is and I need to leave well enough alone....
One thin I have learned is that you have to pick your battles and sometimes it's just not worth challenging him and than creating confrontation....I don't have the answers I wish someone could enlightened me but I don't think there is a right answer...or at least a correct answer..
For now I will have to muddle thru making a decision each time the situation comes to pass. Live with the frustration of not being able to push him to try and shed a few tears in the process!
Sunday, June 30, 2013
Comment on Brad Loula
Today I opened up the blog to post a few thoughts about thing Dakota and I have been going thru..mostly me..hahahaha and there was a comment on our Loss of Brad Loula...from a a friend of his in college Steve Oly...I was already in a state of emotion and his comment just sent me over the top...Steve if you continue to read this I hope you know how important your words were to us and how much we miss Brad now as we did when he first left this earth!
Much of what Brad struggled with was the loss of his friends and comrades from football and college. He was very much a loner and I still believe to this day he was one of the few people who really gets my son....I only wish that he would know that there are people out there who loved him and cared about him and it was circumstance that separated him from all of you....
he had a very tumultuous family life and it laid very hard on his head...and just befor he passed he was having great difficulty finding the right job and I think that ultimately contributed to why his body and mind finally just gave in...To anyone who wants to know any more about him please feel free to contact me thru this blog ...Thanks again Steve Oly
Follow up on Daks trip to the ER..
Well went to the doctors on Thursday with relative expectations ...everything is OK ?But am feeling a bit apprehensive and perhaps questioning the Professionals ability to shrug off what concerned me. I don't mean to disrespect their years of schooling and experience I am just one who feels that you have to go with your gut as stated on the top of my blog.
For the most part the trip to the ER produced NO worry or concern and all the tests were clear ,with the exception of one notation on the CT scan.."mild opalification of spehenoid sinus" Upon my own little investigation I find that this sinus shares space with the middle ear...AHHHH Ha my mind says as Dakota has been having trouble with his ears and I k ow that the ears and equilibrium or balance problems CAN BE RELATED....asked the doc for a referral to ENT and he didn't seem anxious to give me one...got a referral to Neuro tho so will pursue from that point...
I know there something going on with Daks ears and what bugs me the most is that I can't prove it cuz he won't talk about it..I trudge on!
For the most part the trip to the ER produced NO worry or concern and all the tests were clear ,with the exception of one notation on the CT scan.."mild opalification of spehenoid sinus" Upon my own little investigation I find that this sinus shares space with the middle ear...AHHHH Ha my mind says as Dakota has been having trouble with his ears and I k ow that the ears and equilibrium or balance problems CAN BE RELATED....asked the doc for a referral to ENT and he didn't seem anxious to give me one...got a referral to Neuro tho so will pursue from that point...
I know there something going on with Daks ears and what bugs me the most is that I can't prove it cuz he won't talk about it..I trudge on!
Wednesday, June 5, 2013
Visit to the ER again!
Well Friday brought another experience...Having the opportunity t check out the new hospital in our town!!!F U N !
For the second time in 18 months Dakota keeled over ...and could not tell me what was going on .....SO it's off to the ER .Usually by the time your kids are 6 or 7 they can at least express symptoms, when you are dealing with Autism...not so much. I know this is not exclusive to Autism but more common with these kids....Even in case , Dakota is verbal but not conversational so when you are trying to ascertain details or description F O R G E T it! I have liken it to having an infant...you have to be perceptive to what you see, feel, hear and think .....
he got up from the table and started to walk down the hall and all of a sudden just bent over and rolled on to the floor .I don't think he passed out but have no idea why he lost his bearings. In this case there was no questioning my mind I had to take him to the ER . f he had been able to say oh I got dizzy or I tripped or My head was fuzzy I might have just laid him down and watched it pass . when you have something like that happen with no evidence of what's going on, you have no choice,you must investigate. I would never forgive myself if I didn't take him and something further had happened.
Perhaps this sounds reactionary , it only follows my own advice "Go with your Gut"
Double edged sword is this they didn't find anything..but they didnt find anything! I was glad the tests came out clean but then there's no explanation for what happened!I will press on and have follow up appointments, with the inclination that I will press for referrals for what I think is necessary. The only real positive out come was we got the "gamut" of tests done all in one afternoon that would be a nightmare to get done otherwise and now we have a point of reference for the future.
So Stay tunes for further developments...
For the second time in 18 months Dakota keeled over ...and could not tell me what was going on .....SO it's off to the ER .Usually by the time your kids are 6 or 7 they can at least express symptoms, when you are dealing with Autism...not so much. I know this is not exclusive to Autism but more common with these kids....Even in case , Dakota is verbal but not conversational so when you are trying to ascertain details or description F O R G E T it! I have liken it to having an infant...you have to be perceptive to what you see, feel, hear and think .....
he got up from the table and started to walk down the hall and all of a sudden just bent over and rolled on to the floor .I don't think he passed out but have no idea why he lost his bearings. In this case there was no questioning my mind I had to take him to the ER . f he had been able to say oh I got dizzy or I tripped or My head was fuzzy I might have just laid him down and watched it pass . when you have something like that happen with no evidence of what's going on, you have no choice,you must investigate. I would never forgive myself if I didn't take him and something further had happened.
Perhaps this sounds reactionary , it only follows my own advice "Go with your Gut"
Double edged sword is this they didn't find anything..but they didnt find anything! I was glad the tests came out clean but then there's no explanation for what happened!I will press on and have follow up appointments, with the inclination that I will press for referrals for what I think is necessary. The only real positive out come was we got the "gamut" of tests done all in one afternoon that would be a nightmare to get done otherwise and now we have a point of reference for the future.
So Stay tunes for further developments...
Tuesday, May 7, 2013
My Heart Stops when this happens
So I walk into the bedroom yesterday and I realize Dakota is crying ....full bore crying crocodile tears ...sniveling and snotting uncontrollably..MY HEART STOPS.....it is a double edged sword , I have joy that he can experience emotion but sadness because something is breaking his heart. I am quite sure EVERY PARENT probably feels this way ; I can't help my self because he cannot express WHAT IS MAKING HIM SAD....I have no ability to talk him through his feelings or to "FIX" what's has made him sad... I don't know how others get through this....
This is just another "thing" that sets us apart from others...then the guessing starts , the asking starts only to get "I DON'T KNOW GO AWAY " The biggest issue is its oxen up in his head and even thinkin about a psychologist is a wash ...it wont accomplish anything
Well the day has come and gone and I am still thinking about it and what I might be able to do.I can only hope that somehow "nature" will help him work through the feelings and allow him to understand that it's OK to cry and its ok to feel sad but not let it consume you...For now my heart stops everytime he cries.
This is just another "thing" that sets us apart from others...then the guessing starts , the asking starts only to get "I DON'T KNOW GO AWAY " The biggest issue is its oxen up in his head and even thinkin about a psychologist is a wash ...it wont accomplish anything
Well the day has come and gone and I am still thinking about it and what I might be able to do.I can only hope that somehow "nature" will help him work through the feelings and allow him to understand that it's OK to cry and its ok to feel sad but not let it consume you...For now my heart stops everytime he cries.
Sunday, May 5, 2013
Autism Boards Online
As Dakota has grown and now exited or aged out of School have found that many of the Autism Boards ( support groups) that are on line don't really line up with my perspective or needs BUT I stay connected and watch them on a once a week basis just to make sure there's nothing I am missing.
Caviot: on Yahoo under "Health" they have several groups that cater to specific diagnosis or group of people with a common needs and questions...once you put Autism in the search it will pop up probably 100 different options.....you can pick and choose what suits your needs
Ok back to my post, every once in awhile a subject pops up that interests me ....recently there was a mom who was having trouble with trying to find appropriate placement and was considering a "non public" school setting....my response was often the non public classrooms are more of a nightmare and even worse for our kids...perhaps the better option was to try to work in the district to find a better class and a better teacher . The bigger message from me was this our kids spend about 12 to 16 years in school only to leave with a certificate of Completion NOT A DIPLOMA yet most all of them will live out in the community for the better part of 60 years after school and there is nothing, NOTHING out there, no supports no laws nothing to help. You can spend your energy fighting the schools and the districts become exhausted ,listless ,2 steps forward only to go 1and a half steps back and when schools over all they do is wave bye bye ....
I guess my point and the purpose of the this post about the online groups is that there is all kinds of information and choices,wonderful success stories and horrible tragedies ..many of them can help . Just think that they are like anything else where you have to keep perspective of what they can offer...there are some who judge accordion to whether you do and say the same as they do, there are others that you can write and ask questions and no one will ever respond .
Use it as a tool , but always be guided by your own intuition ...
Caviot: on Yahoo under "Health" they have several groups that cater to specific diagnosis or group of people with a common needs and questions...once you put Autism in the search it will pop up probably 100 different options.....you can pick and choose what suits your needs
Ok back to my post, every once in awhile a subject pops up that interests me ....recently there was a mom who was having trouble with trying to find appropriate placement and was considering a "non public" school setting....my response was often the non public classrooms are more of a nightmare and even worse for our kids...perhaps the better option was to try to work in the district to find a better class and a better teacher . The bigger message from me was this our kids spend about 12 to 16 years in school only to leave with a certificate of Completion NOT A DIPLOMA yet most all of them will live out in the community for the better part of 60 years after school and there is nothing, NOTHING out there, no supports no laws nothing to help. You can spend your energy fighting the schools and the districts become exhausted ,listless ,2 steps forward only to go 1and a half steps back and when schools over all they do is wave bye bye ....
I guess my point and the purpose of the this post about the online groups is that there is all kinds of information and choices,wonderful success stories and horrible tragedies ..many of them can help . Just think that they are like anything else where you have to keep perspective of what they can offer...there are some who judge accordion to whether you do and say the same as they do, there are others that you can write and ask questions and no one will ever respond .
Use it as a tool , but always be guided by your own intuition ...
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