September came quickly with the always and ever present birthday looming...lots of preparation and planning,for my boy only asks for one thing all year long and this is it...Don't know if I have ever posted these thoughts but this is my justification ...I have a kid who; all year long NEVER ASKS FOR ANYTHING....you never know what he might be yearning for because he just doesn't express himself that way...ONCE A YEAR he asks to go to the Disneyland Hotel and Goofy's Kitchen..I try to offer other locations or destinations,BUT. NO ..he wants Disneyland...so it is done!
This is a kid who doesn't make a wish list for Christmas,never watches the commercials on TV And says oh I want that MOM,he doesn't ask for Nikes,iPads/iPods, money for the movies or to go out, or for clothes. So the way I look at it if I spent money on all those things over the course of the year it would cost even more than what is spent for his trip....
Every year there are added expenditures that are of NO MONETARY VALUE....sometimes very minimal.This year it was 2 meltdowns and a lost earring...for many reasons the stress and anxiety of this annual event gets to him as much as it does to me...we both look forward to it but sometimes things just do not go according to plan ...
One major challenge this year was the parking...long story short the lot I ALWAYS park in was shut down and created several obstacles ...and it stressed me out..I got huffy and Dakotas "mirrored behavior"kicked in...we made due thru his birthday but somehow by the next day I had a lil confrontation with the parking attendant gaining access to the parking lot I managed to get them to allow me to park in and all of a sudden I was getting resistance..well I got huffy and Dakota followed suit..the arm would come up to let me in and the attendant came over to direct me to another lot but when they observed Dakota having a screaming fit decided to let me in rather than pull their nonsense on me..what a shame that a kid has to have a meltdown before they believe your story that you need specific parking for the reason you stated.....
Oh yeah and Dakota decided to grab me after we finally got parked and I lost an earring...luckily. NOT an expensive one but I was bummed anyway ...that's a minor loss I can live with....
The following day a couple of his friends came and went to the park with him ....and I am still not sure exactly what caused it..but In the bowels of California Adventure..all the way deep into the park, we had ridden several rides and stopped to get refreshments....and when we were checking out his drink tilted ever so slightly but 3 drops fell out and he turned into a basket case...screaming it spilled It spilled...Call the cops!
as luck would have it there was a parade going on outside so the restaurant was a ghost town so I
barricaded him in a corner till I could talk him down off the ledge...I have gone over everything and still cannot point to one specific thing that caused this meltdown...but it was not...I mean hotter than hot that day, he has just gotten off Screaming and I caudled him a lil getting him ready to ride, he had
just taken a stellar pic with his friends and we walked into this restaurant and he lost it....very
unusual for him to be in the park and loose it...and it was a doosey...he went on for what seemed like an hour but it was probably more than 15 minutes..his poor friends just headed outside and the staff was gracious enough to allow me to let it work it's way out....he was pretty intense on this one so I kept him corralled in a corner near the exit and kept talking to him and telling him..it's ok. We can go but he has to get it together and walk calmly thru the park to get back to the room and I can't let him go until he gets it together ...finally the switch flipped and he walked out and made it thru the park and to the room without incident...
Later that night he started crouching like a sumo wrestler and grabbing at his inner thighs and the frickin light went off in my head ..I realized he was chapped and was probably why he flipped.
Guess the whole point of this post is 2 fold ...the first being that when autism follows you everywhere you go,you just have to be of the mindset that things will always be a bit different.(it's usually that way with typical kids too ..it's just a different learning curve) There will always a lil extra price to pay and secondly it is so important to keep and open mind when the meltdown comes ..there's some
reason for it somewhere even if you can't see , don't know where it's coming from or can't figure it out...Do the best you can to minimize it, understand it, tolerate it. Just know these kids don't have the ability to shut it off and often the inability to tell you why it's happening.
Thursday, September 18, 2014
Something that bears repeating!!!
Imagine having a child that was non verbal or does not have enough language to tell you he is hungry, cold, hot or hurt. Imagine that the child can not tell you that they have a head or stomach ache. The child is sad, angry, frustrated, but doesn't know how to express it. Imagine talking to your child may not help him when he is having a behavior, tantrum, or is not complying because that is the only way he knows how to communicate. Imagine never knowing what your child is thinking or feeling. Imagine being out in public and people judging you on being a bad parent because they do not know or could not possibly understand one iota of how challenging your life is moment to moment. Imagine being lonely, having challenged friendships, marriages or not finding a mate because people "cant" or just don't want to deal. Now, imagine sending your child to school with people who cant possibly care about him as much as you do. Not knowing what is happening throughout the day because he cant tell you and you are not sure if you can rely on those who are left to look after and care for him to tell you. You probably cant.. Imagine being called at work because your child was itchy and took all their clothes off in public or was bullied because of his "differences" or coming home with unexplained bruises that never really get fully explained and you would not be able to verify one way or the other anyway. This child does not know how to make or keep friends and is also lonely. This is a common existence with special needs families. Sometimes not as severe. Sometimes much more significantly severe. Welcome to our worlds. Its super easy to judge from the outside looking in but no matter how much you know or think you know..you have never walked in another persons shoes to experience exactly what that have or do. Whether you think you understand and even if you don't understand at all, try to be patient and supportive ...this applies to all people because you never know what challenges anyone is faced with.
This was taken from McClain special education advocacy page...she is one of the heros leading the charge on the unjust treatment and disregard for our children visiting Disneyland...I think it is very succinct and really makes you stop and think...
This was taken from McClain special education advocacy page...she is one of the heros leading the charge on the unjust treatment and disregard for our children visiting Disneyland...I think it is very succinct and really makes you stop and think...
Wednesday, September 17, 2014
Another Fabulous Disney Birthday
Well way behind in posting.....What a day, what a week ..my only purpose is to create memories that Dakota will never forget!!!!
Friday, August 15, 2014
Proprioceptive and Vestibular Interpretation
A Mom posted the other on on a web support group with a picture of her baby standing on flexed toes..(upright with toes folded back and full weight on them)and asking if any other parents have experienced the same...
This was my response....Our kids often seek relief from the crazy things that go on I their brains and certainly physical aspects of our bodies most especially when "contorted"will produce things like serotonin to calm the over activity. For instance head banging .
There far more subtle activities our kids will use and seek when needing relief form the static in their heads...
Two specific types of neurological behaviors are Proprioceptive and Vestibular.
Proprioceptive is a flexing or pressing on joints to create relief from other Neuro pathways that are disturbing an individual...it is quite common that our kids will roll up in a blanket just as they swaddle babies in a nursery, they will get on a couch and dig underneath the cushions for the weight of the cushions to "ground "them ...you can and will see all kinds of actions that seem uncomfortable to a typical person yet it is as good if not better than taking an analgesic ....oh yes and standing on flexed toes or pressing their hands into and upward position so the wrist is flexed is also quite common...
Vestibular is spacial relationship..it is an explanation why our kids have such a tough time with standing in line or respecting personal space or even having exceptional boundaries for their own"space"......they are often restricted by their own bodies to seek and identify space...for instance my son cannot, will not, is unable to extend his arm to lift his elbow to do simple actions like combing or brushing his hair as well as brushing his teeth ...it's not that he is NOT AWARE it is that his body just does not receive the proper signals to perform ...
These issues can be addressed with an Occupational Therapist and usually when our kids are younger they respond well and sometimes Improve...the repetitive programming will sometimes help however it is just a small part of challenges these kids deal with ..Many can have years of therapy but still are unable to improve...
Just another little bump in the road....
This was my response....Our kids often seek relief from the crazy things that go on I their brains and certainly physical aspects of our bodies most especially when "contorted"will produce things like serotonin to calm the over activity. For instance head banging .
There far more subtle activities our kids will use and seek when needing relief form the static in their heads...
Two specific types of neurological behaviors are Proprioceptive and Vestibular.
Proprioceptive is a flexing or pressing on joints to create relief from other Neuro pathways that are disturbing an individual...it is quite common that our kids will roll up in a blanket just as they swaddle babies in a nursery, they will get on a couch and dig underneath the cushions for the weight of the cushions to "ground "them ...you can and will see all kinds of actions that seem uncomfortable to a typical person yet it is as good if not better than taking an analgesic ....oh yes and standing on flexed toes or pressing their hands into and upward position so the wrist is flexed is also quite common...
Vestibular is spacial relationship..it is an explanation why our kids have such a tough time with standing in line or respecting personal space or even having exceptional boundaries for their own"space"......they are often restricted by their own bodies to seek and identify space...for instance my son cannot, will not, is unable to extend his arm to lift his elbow to do simple actions like combing or brushing his hair as well as brushing his teeth ...it's not that he is NOT AWARE it is that his body just does not receive the proper signals to perform ...
These issues can be addressed with an Occupational Therapist and usually when our kids are younger they respond well and sometimes Improve...the repetitive programming will sometimes help however it is just a small part of challenges these kids deal with ..Many can have years of therapy but still are unable to improve...
Just another little bump in the road....
Saturday, August 2, 2014
Cocooning....quite common
Cocooning has been a term adopted for the better part of 20 years as a phenomena that people in general have a tendency to retreat to their homes and severely challenge their social skills..hmmmm sound to me like these people might have a little autism ..haha
Ironically it is becoming all to common for parents and caregivers of Autistic individuals to realize that their lives, particularly the social aspect are severely impacted simply because of Autism being a part of their homes...
I know it is a challenge for ANYONE to participate and be involved with all the activities and events that are now happening......When you have kids with this particular disability it's almost impossible.
There are so many variables: first the general demands like therapies and Dr.s Appointments which are numerous, then the moods and behaviors: just about the time you think you are going to load up the car and go, your child has a rip snorting fit you are sweating , upset and know that if you take that kid anywhere he will probably continue ,then there's the dynamic of other family members siblings who have their own needs or a spouse that maybe doesn't participate,on top of all of this the emotional state you own mind is when it is over whelmed perhaps 80 % of the time......it won't do you any good if you are not "present". Lastly there are the attempt to go and participate with nothing but a big fail coming out of it...personally I can't tell you how many places I have gone Spent time getting dressed and planning on an afternoon, only to get there and within the hour you're leaving because if it hasn't already happened you know that if you don't get out of there it won't be long!
Well anyway the purpose of this post is many of the people on the support groups on line have been recently expressing how they feel socially depressed and don't see any solutions,,,it's very true . I don't think I have any great advice, just observations.You have to find a way to sanity.......if stealing a moment to literally smell the roses or go outside to take a deep breath and look at the blue sky and clouds works...Do It. If trying to meet someone somewhere and deal with everything that it takes to accomplish that ..then Do It. You just have to do what it takes to give you the most peace. living with Autism can be all consuming and if COCOONING brings to joy then Do It. Donot allow others opinions or expectations to rule you..do what's right for you, your child and your family!
Ironically it is becoming all to common for parents and caregivers of Autistic individuals to realize that their lives, particularly the social aspect are severely impacted simply because of Autism being a part of their homes...
I know it is a challenge for ANYONE to participate and be involved with all the activities and events that are now happening......When you have kids with this particular disability it's almost impossible.
There are so many variables: first the general demands like therapies and Dr.s Appointments which are numerous, then the moods and behaviors: just about the time you think you are going to load up the car and go, your child has a rip snorting fit you are sweating , upset and know that if you take that kid anywhere he will probably continue ,then there's the dynamic of other family members siblings who have their own needs or a spouse that maybe doesn't participate,on top of all of this the emotional state you own mind is when it is over whelmed perhaps 80 % of the time......it won't do you any good if you are not "present". Lastly there are the attempt to go and participate with nothing but a big fail coming out of it...personally I can't tell you how many places I have gone Spent time getting dressed and planning on an afternoon, only to get there and within the hour you're leaving because if it hasn't already happened you know that if you don't get out of there it won't be long!
Well anyway the purpose of this post is many of the people on the support groups on line have been recently expressing how they feel socially depressed and don't see any solutions,,,it's very true . I don't think I have any great advice, just observations.You have to find a way to sanity.......if stealing a moment to literally smell the roses or go outside to take a deep breath and look at the blue sky and clouds works...Do It. If trying to meet someone somewhere and deal with everything that it takes to accomplish that ..then Do It. You just have to do what it takes to give you the most peace. living with Autism can be all consuming and if COCOONING brings to joy then Do It. Donot allow others opinions or expectations to rule you..do what's right for you, your child and your family!
Friday, August 1, 2014
" Triggers "
I have been wanting to write about "triggers " for awhile ...just haven't accumulated the necessary content .....
Triggers are exactly what they say....for Autism, it can be almost anything imagineable that is the onset of behavior and meltdowns.For instance.....those of us in the community refer to different things as possible "triggers" often never really knowing for sure because it is a great mystery and our kids just can't ,won't or don't tell us what caused them to go "sideways".
"Triggers"come in all kinds of forms and sources.They can be emotional, physical, psychological,environmental or sensory driven.Examples would be observing an argument by others-emotional:a t-shirt with a tag poking their neck-physical: their brain not accepting a command to work a part of the body-psychological:a color or texture of carpet or walls-environmental and finally a noise..like a trash truck going by- sensory
There are hundreds if not thousands of these occurrences every day and many of our kids do develop a level of tolerance for most however almost every individual has a few that no matter how hard they try; they cannot handle it and will meltdown.
There are hundreds if not thousands of these occurrences every day and many of our kids do develop a level of tolerance for most however almost every individual has a few that no matter how hard they try; they cannot handle it and will meltdown.
Its funny as a parent who is keenly aware of this, as most parents are, you try to be present and eliminate as many "triggers" as you can BUT there are always those that sneak up on you . They leave
you confused and wondering for hours, days sometimes even weeks
what the hell happened and why did our child go off like that...you analyze, pick a part try to identify and many times never come up with an answer.....other times I have what I call (open hand slapping my forehead) "wow I should have had a V-8" moment...all of a sudden it's like the light has come on and you completely know what it was that caused that meltdown .....You make a mental note and forever in the future you try with everything you have to avoid that "trigger"! Often we as parents and caregivers identify this "behavior" as adopting a kind of autism;by osmosis. Another
observation by many is that you become "anal" when trying to
avoid certain Situations or making certain environments identical in order to eliminate the meltdown.
One thing for sure most of the public or community don't get it or understand it.Once the individual explodes and is observed then it becomes apparent the need for a a routine or pattern.
Triggers are a tricky thing. Your child doesn't tell you "Oh That's Pissed me Off" or "the color bothers me"or "the noise is irritating" It's really a crazy feeling when you are constantly reviewing environments in order for your child to function "typically". Just another part of the job!
you confused and wondering for hours, days sometimes even weeks
what the hell happened and why did our child go off like that...you analyze, pick a part try to identify and many times never come up with an answer.....other times I have what I call (open hand slapping my forehead) "wow I should have had a V-8" moment...all of a sudden it's like the light has come on and you completely know what it was that caused that meltdown .....You make a mental note and forever in the future you try with everything you have to avoid that "trigger"! Often we as parents and caregivers identify this "behavior" as adopting a kind of autism;by osmosis. Another
observation by many is that you become "anal" when trying to
avoid certain Situations or making certain environments identical in order to eliminate the meltdown.
One thing for sure most of the public or community don't get it or understand it.Once the individual explodes and is observed then it becomes apparent the need for a a routine or pattern.
Triggers are a tricky thing. Your child doesn't tell you "Oh That's Pissed me Off" or "the color bothers me"or "the noise is irritating" It's really a crazy feeling when you are constantly reviewing environments in order for your child to function "typically". Just another part of the job!
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