It must be the TIME of the Year---Mothers Day

I am not quite sure why the emotions "crowd" up on me around this time...perhaps it's just coming out of a sleepy winter and lots of things are awakening including my feelings . One thing I know for sure is Mothers Day is next week , I am experiencing melancholy and a bit of loneliness.....not typical of my personality !  Also reviewed my posts on this subject and there are  4  excerpts out of  over 350    So  I know this is a redundant topic.

I must say I am a very independent woman and am not one to ask for help or assistance unless it is absolutely necessary, however I am an extremely emotional person ....Mothers Day just gets to me. I find it challenging to portray my thoughts because I do not want it to sound like an "oh poor me scenario"....It is not
What "it" is :  is my need to describe how different our (many mothers of children who are disabled) experience is so much different from the rest of the world  and although its not about pity or compassion or even empathy it's more about explaining a world that I don't believe most people even knows exists.. I know there has to be someone in every ones life that knows one of these Mothers, is friends with one of these mothers , works with one of these mothers or somehow has contact with one of these mothers....My point is that our kids love us yet will never be the one to surprise us with a Toaster Strudel and the morning newspaper in bed  or even one that has the ability to go any place and pick out a card yet they will be the same ones who reiterate and yammer for days if not weeks before that Mothers Day is coming....

Now no one can replace what a mother would want her child to do but this is more about any little kindness that could be passed on like trading a shift, or  a phone call just to see how they are, giving a coupon for money off a dinner or even a simple eye to eye greeting with a "hello how ya doin".

I really must say I think this is more about the masses out there but it's driven by my experience...this can translate throughout the year .....for me it's just The Time of the Year that makes me sit down and post! B T W  Happy Mothers Day to all Mothers cuz I know we all have our own dragons to slay and different situations...Make the best of the DAY!

Guilt...

The one thing I have said all along is that Dakota will always have memories and NO ONE can take that away from him...I have a tiny bit of guilt more often than I would like to admit that I could always do more for him.
I do my best but I have always been one to second guess my efforts.. In other words I am my worst critic,,,perhaps that's how all of us are it just seems to be magnified when it comes to a child that literally depends on you for  pretty much everything...
I look around and see many kids some challenged some not and I am always thinking I could do that or should I have done this???? Well so an so did this maybe I will too....On the flip side I also see so many kids that have parents that pretty much don't give a rip...So There is no easy answer...never have been one to follow , always been one to march to the beat of A different drummer  just want my boy to have the best life he can...
I truly believe that you cannot be happy with anyone else until you are happy with yourself AND you cannot compare yourself to anyone else ....It never stops the guilt from creeping in occasionally.

More importantly when my time comes to leave this earth I can only hope that Dakota is happy and filled with memories to last his lifetime AND that somewhere out there there is someone who will carry on taking care of my baby and give him a few more memories .

First Tidbit of the month...

So many times I have witnessed Dakota in a group of peers and his attempts to enter a conversation. Although  the others are caring and compassionate and want to Include him most times than not he gets lost in the shuffle . He will pickup a word or topic that goes floating thru and then make a statement usually unrelated to the general conversation but specific to a word which will either be ignored because no one took the time to realize what he's doing  or  they will wonder why he's talking about that particular word or subject when they have all just discussed it but have already moved on and forgotten ....A N Y W A Y....My point is ( as I have said before many times) it's all happening in that brain even if none of us can DECODE IT... On my Facebook page just today I came to this conclusion 
"Just cuz they DON'T ; doesn't mean they CAN'T!"

April is Autism Awareness Month

Funny how fast the days blend onto weeks and months ...I cannot believe its already time for Autism Awareness Month...Not that it is any different than another ..just gives many of us an excuse or reason to highlight what we know and how we can educate others on autism! Will try to be diligent on posting Lil thoughts most especially this month and imagine that it's already the 8 th...YIKES

Growth????

I have always told others who are in similar situations its a matter of the moment that you are in that dictates your perspective, actions, thoughts and emotions. I am quite sure that this true in the typical world for most people whether it is raising and rearing children or just people trying to muddle through life....However I do believe that when it comes to children it seems to be magnified simply because the added responsibility of how that "being",which is a part of you, projects and portrays him or her self to the world.  Add to that there comes a time when most , NOT ALL, are ready to leave the nest ..... There's always that wonder and worry " will they be able to make it.." " how will they handle this or that situation." "Do I rescue them if and when the time comes? "

With our kids  we ask our selves similar questions usually in a delayed state but overwhelmingly the questions from friends , family and even strangers is almost always " will they (our children) ever be able to be on their own?" "Will they grow out of this."   HONESTLY there is no pat answer and for the most part it is a wait and see stance we take with cautious optimism that our greatest fears will never come to fruition..That they will always need care ...

There are all kinds of things being done to "intercept" Autism mostly with what is called Early Intervention Programs which just like everything else has its positive points yet still bears no real solid stats to prove or disprove its effectiveness. Add  to that the wide  spectrum of Autism it's all just a guessing game..don't mean to be a Debby Downer ....every kid is a different "bag of tricks" and we have to search for what works in  each individual case.

Personal experience bears this out, I have seen and also know of numerous kids who have had "growth spurts" ( not of the physical kind ) at ages 7, 9, and 11. Once puberty hits the horizon not only is it pure hell on earth magnified 1000 times by Autism  BUT it is also time time where we sweat bullets because it is known for a time when many Autistics revert . Many books, studies and   parental observations have been written, how our kids lose a lot of what they have learned, can sometimes develop   other maladies like seizures or other disorders worst of all they start going backwards developmentally.

Luckily for Dak we haven't had this experience .Although he is much more intelligent than we can prove on paper and appears to be communicatively awkward there is so much more I. There than most anyone gives him a chance to display...THAT'S OK   Living with him 24/7  gives me a little broader view of what's going on in that head of his because it gives me opportunities to see the genial nuances of "lurks" in that brain of his...and certainly a way for me to ascertain his "growth spurts" .Once and autistic person hits puberty it's almost always considered an apex for learning and therapies...Try to get funding for programs or insist that you believe they can still benefit from interventions and you literally get laughed out the room . And try to tell someone at  his age that he is experiences another growth spurt they might as well put a Jesters Hat on me and tell me to entertain the king and his court!

What I will say is just that, and laugh all you will , question my ability to recognize this type of  progress, tell me I am crazy or imagining it or that because I am a mother just desperate to wish my son more progress that I am manufacturing it ....I DON'T GIVE A DAMN because I know what I see and what I hear....I am seeing another brain growth spurt...right now and for the passed several weeks. I will bore you with specific examples ..questioning bout words he has heard and wanting to know more about then ..when he never did before, reciting lines for a movie that he hasn't seen in 10 years , even more expressive language and his ability to speak an opinion or even say a sentence about wanting to do something where before it was more of a grunt or a physical reaction.

It's not rocket science and the fact still remains that he will need someone around most of the time for the rest of his life but it doesn't mean he should not be giving accolades when he is continuing to grow . Even more important is the message I am trying send to others which is Never Give Up and  Never Give Up Hope...Don't let others talk you down from your stance when you know what you have seen or heard. It does happen and it can make a difference for your child's life because eventually someone will have to listen to your barking ....If you see GROWTH ; talk about it,document it  and insist that whether some one listens or does anything about it THAT IT STILL EXISTS!

Hamster in a wheel

I posted the other day on Facebook that sometimes I feel like a Hamster in a wheel... I cannot seem to see the light at the end of the tunnel and that for the rest of my life everyday until I pass that I will be helping care for Dakota ...AND sometimes that exhausts my mind,.it frustrates me , and yes sometimes even pisses me off....Not as a resentment toward Dakota but just as an overwhelming thought of helplessness and in ability to have any control over the situation. By the grace of GOD I am not a controlling type of personality and that one thing has helped me thru.

When we have these children and eventually get a diagnosis one of the first questions we ask ourselves and then others will ask quite often is "will he be able to take care of himself" ...at what age should you start seeing these abilities... and day after day , month after month , year after year , as they go by you keep that lamp lit and keep hoping that things will develop .... Every tiny step is a blessing and you continue to hang on to hope that maybe just maybe  he will burst out in flames and he will do things like we never expected. Of course as the years go by you set your expectations aside and keep plugging away and continue to be Thankful for any progress [especially during puberty}

When the school finally exits your child having done a lot less than promised or expected and you have sat for hours on end reading, playing, teaching  and the 20's roll around you really start re assessing... Don't get me wrong I will never give up BUT you have to start re evaluating whats been done and what can be done.... also by this time the child is no longer child in most aspects yet hes not like a typical kid and cannot be treated that way ether.

The most prominent thing I have noticed is that he is more and more set in his ways and is much more resistant to change ..PERIOD.I don't think I could have done anything differently and I will continue to challenge him to try something new ;but I have come to a place where I evaluate the the purpose and the reward vs. the fight to put a new thing into action. At this point in time I always ask is it worth him acting out , getting upset, crying, yelling etc etc just to have him experience something that I think is good for him when he clearly doesn't have the interest or understanding???Again I will not give up but I make sure that if I am going to push his limitations It better have a profound benefit to HIM  and not me or anyone else. Why make his world any more stressful than it already is... Can you imagine living with a woodpecker tapping at your skull day in and day out and then someone asks you to stand near a chainsaw all day???

I guess the whole point of this post is to vent {a lot} and speak to others who live in the same situation to let them know they are not alone ... one of my friends on Facebook merely said its not that you cant see the light at the end of the tunnel  its just that the tunnel has a bend  and you are not around it yet....We all need help and we all need to know to ask for help . So many of us just don't ....