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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

My son did have his Eval Appt Today for Diagnosis for those who requested update!

Posted by on Sep. 23, 2013 at 6:57 PM
  • 29 Replies

(This is today's post on my blog but on this group we are not allowed to post any information about outside blogs addresses etc so I just wanted to share with all of you how the appointment went today and how other things are going since so many of you asked me for an update to the Evaluation appointment for my son which I have been telling you all about that information is below)


They say the good die young...  And for some reason I cannot understand this….

 Well let me back up and explain why I am feeling the way I feel.  My son had his appointment today for his official diagnosis.  Leading up to the appointment this morning I was restless and not really sure of what was going to happen.  Would it be confirmed officially this time, that he is autistic or would they delay his diagnosis?  Would they say he is growing out of it or they no longer see the things in him I see?  The whole 2 hour ride this morning I was on edge, nervous, tired from lack of sleep and confused.  Finally this day had come but I am not sure I wanted it as badly as I once did.  Something was going to happen today that could possibly never be taken back.  When we got to the appointment my nerves had settled.  It was going to be what it was going to be and I sure as hell couldn’t change anything.  Within the first few moments of observing Kian, the Dr. came over and said, “Just after a few moments with him I can see the characteristics of Autism.” On the inside that knocked me off my feet.  How can anyone see after only a few moments, literally only seconds with my son that my child was autistic? Why has it become so overwhelmingly obvious?  Maybe I was right to think that everyone in the world will be able to see that.  Maybe I was that dumb all along that I had still not even felt 100% sure at times that Kian was autistic.  Even after a previous evaluation.  After regaining my composure on the inside I took a deep breath and was ready to roll.  We went back and did the evaluation and honestly there was nothing surprising or odd that occurred.  See prior to the appointment I was convinced my son would be a mild case of autism at best with the possibility of being moderate.  I was certain my baby was too bright and too full of life to be anything other.  Well I was never truly prepared for what I was going to hear.  As I waited on him to tally up all of the final scores and make a conclusion.  I was nervous but I was still anticipating the best possible outcome, if there is a best possible outcome with autism.  I wouldn’t get my wish today, I usually never do anymore.  The Dr. returned from his office and sat down to talk…. and I am not really even sure what he said after he officially diagnosed my son with Severe Autism as my mind is heavily clouded these days.  I saw his lips moving and I am sure there was some sound coming out but nothing could quiet the screams or crumbling that I felt inside.  It’s like lethal injection in a way.  You can feel all the pain and heartache but you cannot move, speak or even breathe at times.  You know you are alive but it’s outer body.  The word severe is crushing, devastating and almost unspeakable.  I am not sure if I will ever use the word again after this blog post.  What does severe mean? What does it mean? I cannot process even a simple definition as it seems way more than I can comprehend.  How could something be way worse than I could have imagined? The Dr was very positive and set up all the info that we needed for all of the therapies and medical needs we were going to have ahead of us.  But that doesn’t change the heart of a grieving mother.  

The truth is, I was grieving long before today.  I was grieving over what was to come with my son for a long time.  I knew something was to come.  There was some reason my son has yet to acknowledge my presence or call me, “mommy.”  But if you can believe it, I was grieving for more than one reason.  I know right? Tragedy seems to occur around the same time frames sometimes.  As some of you know my father was diagnosed with Cancer not to long ago.  What a devastating blow for any family to suffer.  Things have not been as cookie cutter or easy as I have led some to believe.  My father’s time here is dwindling down and things don’t look as good as I had once hoped.  He has such a will to survive and such a love of life. He is so positive and I think it has been hard for him to be brutally honest with me because he loves me and doesn’t want me to be hurt.  He has kept some tough information from me at times.  But can I blame him? No, not really because until today I had kept my son’s diagnosis from him.  I hadn’t even mentioned the trauma that we were going through with my son.  I hadn’t mentioned the sleepless nights, long days or the hours spent crying.  I hadn’t mentioned the desperation this has caused, the nights spent up researching or the nights I cry myself to sleep.  I had kept this information from him to protect him and he had done the same.  I think we both realized today that being an open book about what is to come is critical.  I simply can’t imagine my father leaving this earth without spending one last day with him.. one last moment together.

So back to the beginning of this blog post we go.  They say the good die young. Why is that? Why do the good have to die young at all?  Why do the good get sick? Get cancer? Or even get autism?  My father has always been an exceptional man, a business owner, served his country, the local sheriffs department, paid his taxes and was kind to all around him.  Why does he have to die so much earlier than most? Why does he have to suffer with cancer? When there are so many evil people in this world in perfect health.  My son is a beautiful, vibrant and loving person.  He has been kind to every person he has ever come into contact with.  Why is he suffering with autism?  He doesn’t deserve this.  What could two of the most important people in my life, have done to deserve such tragic outcomes?  What I have I done? I think that there are just so many questions in my mind.  And right now I cannot help but sit in the dark and empty “why me” phase.

When people you love are suffering around you, you suffer.  There is no remedy or medicine to fix a grieving heart.  There is no words or saying that can make a bad situation better.  Only God has a say in the end.  I have never been more devoted to my Heavenly Father than I am today and he gives me the strength to carry on.  Every day I wake up, unsure if I can even go on another day.  You can have a great career, nice place to live and all the luxuries and money in the world but when you don’t have your health life can really put a whooping on you.  That’s often how I feel, beaten.  I have a beautiful family, a successful significant other, incredible long time friends and a college education and I still find myself in a bit of a depression over my dad & son.

I try to share some positive and negative (rather real) things on this blog always and I use my blog as a place of self expression and as an outlet to say how I feel not really caring about who judges me.  For every person that is going to judge me for my reality 2 more are going to help me, inspire me and be inspired by me.  The people who love me always will and the ones who don’t never even tried.  So there you have it.

 

PM me with any questions about things. Thanks

by on Sep. 23, 2013 at 6:57 PM
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Replies (1-10):
jowen905
by Jan on Sep. 23, 2013 at 7:26 PM

Oh, Stephanie...I lost my dad at a young age and my best friend/cousin when she was only 32.  I don't know why these things happen.  I absolutely do believe that God has a plan for all of us, but his plan is so big and we only see a miniscule fraction of it, so in no way can we understand the big picture.  But even knowing that, it still hurts when bad things happen.  I wish I had an answer for all of us.

You are a strong lady and you will get through this.  Allow yourself the time to grieve, but then be ready to pick up and start the therapies, the research, the appt., etc.  And remember we're all here for you!  (and you're in my prayers)

Stephanie88B
by on Sep. 23, 2013 at 7:30 PM

and I am forever grateful for you... and everyone else here who cares enough to be a support to me.  It's defintiely a situation where I feel like a fish out of water.  I am definitely feeling all of the "why me" right now.  I do need to keep going but I am agraid that if I lose my dad I will lose my will.  I hope not.


Quoting jowen905:

Oh, Stephanie...I lost my dad at a young age and my best friend/cousin when she was only 32.  I don't know why these things happen.  I absolutely do believe that God has a plan for all of us, but his plan is so big and we only see a miniscule fraction of it, so in no way can we understand the big picture.  But even knowing that, it still hurts when bad things happen.  I wish I had an answer for all of us.

You are a strong lady and you will get through this.  Allow yourself the time to grieve, but then be ready to pick up and start the therapies, the research, the appt., etc.  And remember we're all here for you!  (and you're in my prayers)



TheJerseyGirl
by Michele on Sep. 23, 2013 at 8:01 PM
1 mom liked this

 This was  a beautiful post, Stephanie. I swear you took the words out of my mouth but wrote them down in a way I never could.

It's a lot to take in but something that will become all you know at some point. You are spot in about your feelings and every one of us in this group feels it like you do, so there is never any judgement here...only support and lots of hugs.

I'm so happy you found your way into this group. Not only are you going to learn alot, but you are also going to be a great support to so many of us.

Momof4AEMW
by Gold Member on Sep. 23, 2013 at 8:05 PM

Hugs Mama.  Everyone takes the news differently, but we are all here to support each other.  I am glad you got your answer even if it was not the one you were hoping for.  Knowledge can be everything in helping our kiddos.  Don't forget your son is still the same wonderful boy today that he was yesterday, and autism is just a small part of who he is, not who he is.  You sound like a strong mama with a good support system to help you though.  That is great.  I hope things work out for your dad and he is able to fight this thing and win!  Whatever you need this group will be here to support you!!

Stephanie88B
by on Sep. 23, 2013 at 8:39 PM
1 mom liked this

Thank you.. I am glad too because It's a lonely road without support and I do it on my own.  I am so glad to be a member


Quoting TheJerseyGirl:

 This was  a beautiful post, Stephanie. I swear you took the words out of my mouth but wrote them down in a way I never could.

It's a lot to take in but something that will become all you know at some point. You are spot in about your feelings and every one of us in this group feels it like you do, so there is never any judgement here...only support and lots of hugs.

I'm so happy you found your way into this group. Not only are you going to learn alot, but you are also going to be a great support to so many of us.



Stephanie88B
by on Sep. 23, 2013 at 8:41 PM

Thank you.... this group has been amazing so far.  Always anwering my questions always giving advice


Quoting Momof4AEMW:

Hugs Mama.  Everyone takes the news differently, but we are all here to support each other.  I am glad you got your answer even if it was not the one you were hoping for.  Knowledge can be everything in helping our kiddos.  Don't forget your son is still the same wonderful boy today that he was yesterday, and autism is just a small part of who he is, not who he is.  You sound like a strong mama with a good support system to help you though.  That is great.  I hope things work out for your dad and he is able to fight this thing and win!  Whatever you need this group will be here to support you!!



KatyTylersMom
by Silver Member on Sep. 23, 2013 at 8:45 PM
1 mom liked this

I think you already know this but maybe seeing/hearing it again here will help in some way - even if you lose your father here on this earth he will still be there at all times, watching over you and helping you find your way with your son and the rest of your life.  If nothing else you can always ask him for help when the chips are down and no one here on earth seems to be able to help in the way you need. 

And "severe" is just a word, same as "autism" - it can feel like a diagnosis has taken your son from you but I promise you'll regroup and you'll find a way or many ways to fight back and to win.  There are a lot of great therapies, diets, medications, and many other treatments for autism and the nice thing about this forum is that someone will likely have tried it, or at least heard of someone who has, so you can get some preliminary information before ordering every book off of amazon:) 

And as always we're here for you.  My world fell apart on January 31st, 2012 when my 19 month old son was diagnosed with mod/severe PDD-NOS which now would just be called autism.  It cracked and crumbled just a bit more in November 2012 when my 3.5 year old daughter was also diagnosed with mild/mod PDD-NOS.  So believe me, I know how it feels but you put it far more eloquently than I ever did.  That feeling of hope right up until that last second when the doctor's mouth forms the word "autism" was just excruciating when it was ripped away and replaced with a new reality filled with the unknown and therefore a whole lot of fear.  But I'm here to tell you that now, a year later my kids give me new reasons every day to hope that they'll be able to accomplish their dreams.  The fear is still there, that scream is still there inside my head and heart, but hope helps to drown it out.     

maciymommieof3
by on Sep. 23, 2013 at 9:29 PM

ditto to what Michele said.

Quoting TheJerseyGirl:

 This was  a beautiful post, Stephanie. I swear you took the words out of my mouth but wrote them down in a way I never could.

It's a lot to take in but something that will become all you know at some point. You are spot in about your feelings and every one of us in this group feels it like you do, so there is never any judgement here...only support and lots of hugs.

I'm so happy you found your way into this group. Not only are you going to learn alot, but you are also going to be a great support to so many of us.


humbledmom310
by Kelly on Sep. 23, 2013 at 9:29 PM
1 mom liked this

My son was diagnosed with "Classic Autism" (severe Autism) at 26 months. We were told by the doctor he probably would never speak. Fast forward to today.... My son will be six in November. His speech is now age appropriate though he still struggles with expressing thoughts and pragmatics. He is in a mainstream kindergarten and has recently been diagnosed "twice exceptional" meaning he has Autism and he is gifted. He reads and does Math at a third grade level, has a photographis memory so learning anything new is very simple for him. He is an incredible artist and extremely loving. He has interest in his peers at school but still struggles with keeping a conversation going with his peers (although he has no trouble holding one with an adult. He still has gross motor skill challenges and motor planning difficulties but he does see a OT and is making progress.

My point is this... Do not let a label define who your son is.... You mentioned your baby is bright and full of life. Sometimes we mothers can see things in our children that others can't. Discover his strengths, build up his confidence, and never let your mind set limitations for him. You will be amazed at what he can become with you just loving him unconditionally like you already do.

kajira
by Emma on Sep. 23, 2013 at 9:37 PM
2 moms liked this
Well, I was diagnosed with severe classic autism based on the point system of the ADOS test... and i'm a functional person with 2 kids, and a husband... I'm autistic and severely autistic, but I have a pretty normal, functional life. Don't let the "words" scare you. Actually, for me, knowing I'm severely autistic, I feel it undermines me every-time someone tells me i'm so normal sometimes because it's like, I struggled my entire life, why won't you just say i'm different... I don't think it's a bad thing... ^.^ They mean well, truly, but you're going to hear a lot from people who don't spend alot of time around autistic people, that your son seems normal to them. It's odd how a trained specialist can spot in in us in a heart beat, but the average joe just thinks were "Fine".
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