Trying Hard not to be Defined ONLY by Autism or My Child

I believe I have written about this topic before ...do not know if I can offer any new insight but it has come to the forefront of my thought process again so here goes......

I dont write often about my personal dreams aspirations or expectations, after all this is a blog about living with Autism and it designed to address help, inspiration and encouragement to others traveling the same road. It has become glaringly apparant that there are a lot of us out there "on our own". That's not to say that there are not spouses, mates or exes that have some or little involvement and extended family that can, sometimes or often lend some kind of support in the daily routine or care for our kids.
Not to mention that is is relatively rare that the family is comprised of one individual with autism and there are no siblings. It is also more common than I imagined that many have more than one individual who has some type of challenge or diagnosis.

Guess where my thoughts are going is to the Mothers And  Fathers...who are out there doing it basically alone...and how their personal life and needs are altered simply by the fact that Autism has knocked on the door. It's no secret that the divorce rate is about 75% with families who have individuals on the spectrum AND THAT Autism played a major role in the demise of their union. It's not about pointing fingers who right who's wrong who didn't do what...IT JUST IS
Which leads me to the point of this passage...
just because you have a child with Autism doesn't mean your life should come to a screeching hault....BUT IT USUALLY DOES. People will say "you still have a life" "you can't let  IT control the situation" "don't you want or need someone" "oh there's  someone out there who will understand""there's someone for everyone"" you have a life ,too" and it goes on and on...it's not about putting your life on hold: the reality is autism is here to stay its real and it is a lifetime.So where do you go with that? how do you even attempt to simply date muchless meet a new partner, with the goods you have to sell? 

We are tired, frustrated, mentally and even sometimes physically abused.....we love our kids and won't give up on them but often just don't know how many more days or hours are in us. How can we possibly ask and prospective person to "buy a ticket and come join the show?"
I certainly didn't write this excerpt with the intention of having an answer for any who read but I can tell you that for me there is no right or wrong answer.....because I have faith that there are people who can accept these circumstances. I also am realistic to know that it is rare. I am famously quoted as saying "it's hard enough to be a single parent with "typical " kids and trying to find someone ...which very rarely works out BUT add to that a child who has developmental issues ....might as well forget it"

Our lives are filled with schedules and routines, doctors and therapists, coaches and programs..how do we make it all work..usually by forgoing a relationship.Less 
complicated and certainly  simpler.I am not sure that is how it is supposed to be. 

I am forever an optimist and choose to believe that if it is a factor in your life that is important then some how,some way,you will find a way to make it work. I will counter that with it's OK to be alone and to know that if you are comfortable that way there's is nothing wrong or odd and no ones opinion should color or change yours...

Since I am 28 years into this journey and the majority as a single Mom I can say that it would be nice to find someone. On the other hand where's the time or ability to do that???Not Sure..even go as far as to say that it could be an even bigger nightmare,if it's not the right one.It not about giving up or giving in, it's more about doing what works for everyone. Sometimes that means that you are the last one on the list.

In conclusion I will say that having someone there to even do something as simple as bring you a glass of water can be an exhilarating fabulous reward and is worth figuring out how to make it work.I recently got the opportunity to go out for an evening without Dakota (which had been years) Not only did I really need it and enjoyed it but realized that I was not defined by my child or Autism. That was a very good feeling

"Momma said there'd be Days like this"

Last  night as I was reading posts of FaceBook one of the parents posted what I think was not only the MOST appropriate  BUT WELL STATED comment about Autism in general:

Dear autism, we have had enough of you today, please go away. We are done with you. We are definitely breaking up. Please don't call or text. GOOD byyyeeeee!

The best break I have seen ...it gave me a chuckle but it also validated every day, every time I have just had enough..

I also recently learned that a close friend of mine has just started a journey of her own with the new job of caring for a family member who has dementia...She wrote me and said that it was challenging and some of the things that have happened were never in the realm of  what she ever imagined....."welcome to my world" 

I have made the observation that some people go through life virtually unscathed..no illness, no death, perfect kids and relationships and it's as if they are under some kind of lucky star...others can't seem to escape drama, maladies and constant turbulence in their lives...As I have gotten older one thing I have realized that almost everyone has at least ONE THING! One Wart, if you will! And we all learn to adjust, accept and deal. The bigger point is that USUALLY it is a passing thing it's a time you get through and then it is over. Autsim AINT THAT WAY! I think that is the most poignant observation.

Today was a day I needed that break up speech..simple and true. Dakota recently had a couple of weeks that were for lack of a better word challenging. I t frustrated me but more it affects me emotionally. For the most part I can pull myself up by the bootstraps and get on with life but when it just keeps coming back at you again and again, it wears you down. I must admit I have had more than a couple of days wiping tears that well up in my eyes because  nothing just goes right and I cannot blame Dakota it is NOT his fault. His life and structure are so ridgid and it shrinks his world...mine along with it. I don't worry about the consequences for me only for Dakota. He did not ask to be born  so it is my job as his mother to do everything in my power to give him the best I can offer him.

Many criticize and make remarks ...he's spoiled , you do everything for him, he's always by your side.YES that's right. I owe that to him, I owe him a decent life ad NO ONE ELSE WILL DO IT FOR HIM. As long as I am on this planet and breathing he will be my job. And I can only hope and pray that when I am no longer able to do it that some how some one will step up and TRY to continue  what I did.....

Never-the-less one thing that can not be taken from him is his memories.I hope that as rotten as some if the times we have had to deal with that he will always remember his Momma loved him and your always walk on hot coals for him...I owe him that much!

2 Meltdowns and One Lost Earring!

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.

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...

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!!!!

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....