Tuesday, November 27, 2012

A really hard post

I don't really know where to start on this post.  If you know me well, silence for means problems.  If I'm not posting for a very long time.. such as now, or I am  not returning calls I am struggling.  I am broken right now.  I am broken for many reasons.  While I wish they were noble causes or something of the sort, quite frankly, I am just breaking.  I am frustrated and lost and feeling very fragile.  Our family has had a very rough couple of weeks.

Since I last posted I have become the legal guardian for my little brother making it 7 kids in our home.  We have really had a rough few months.  Both of our vehicles died, business has been slower than usual, Employees have gone bonkers, we had a car accident, and the stress levels in our home have been out of control due to all of this.  I really don't know what to share and what not to share as this is available for those all over the world to see. I am a pretty transparent person, but I also feel the need to keep some things private.

One of the things that hit me hardest was what happened a week ago today...   Adrian has been struggling.  A lot.  We have all been struggling with him.  We didn't know why he didn't seem to grasp the things we were trying to teach him or to remember seemingly simple things.  We have worked with him so much and yet so many things we have had to do over and over and yet it doesn't seem to stick.  With adding 2 more ESL kiddos this last year and having our struggling business to run we decided to try a new schooling option.

We are still homeschooling our kids; however there is an online program our state offers that assists us with planning out the work and really makes it quite simple to handle all the kids.  Compiling curriculum for 6 kids at all different levels was going to be a challenge.. one that was daunting to me and really quite scary.  I didn't want to fail my kids and I also didn't want to be bald from pulling out my hair.  We started this program and the first thing they did was test all the kids.   As expected we had to start at ground level for Aaron and Aliyah, Austin and Ayden were right on track, Lexi needed some refresher courses to increase her reading level and Adrian, well, he was struggling.  We had worked with him for the past 2 years and yet didn't seem to be making much progress if any.  We thought he was just being stubborn because, hey, he hadn't had to do school for 13 years and maybe he thought if he just didn't do good we'd give up and he wouldn't have to do it.

Over the last two years we have worked hard and he has completed up to 2nd grade.  He still struggles with speaking in proper English and math is really difficult for him.  When he did his test he seemed to be so lost when looking at the problems and he completely failed everything.  We got his report and were told he needed to start all over.  He had no retention or he was just really, really stubborn.  Knowing how much we had worked with him we decided it must just be a stubborn streak and so we'd back him up and he'd have to do it all over again and work extra hard to get up to speed.

Well, after about 2 months of this same pattern we became increasingly concerned.  He would do some assignments and ace them and others he'd bomb.  He would do one lesson and fail it then ace the test or vice versa.  After talking to the counselor for the program and his assigned teacher we felt we should test him for any developmental delays and see if there really was something more to this or if it was just pure stubbornness.  3 weeks ago Adrian and I spent an entire afternoon at a psychologist office.  First I went in and was asked a plethora of questions and then handed one questionnaire after another all asking about his typical behavior, responses, speech, and more.

As I answered all of these questions I became increasingly concerned that we were pushing him to do more than quite possibly he was capable of doing.  I read over the questions and had to mark how like him it was to do those things and respond in those ways.  I began to think we had missed it.. we had not seen all these signs for what they were.  We had screwed up.  The psychologist took Adrian back and spent hours with him and came out a few times to bring me more questionnaires.  The titles of them were daunting, the accuracy of them in relation to my son was overwhelming.  Here I sat filling out form after form and slowly realizing what I had denied so long ago...  I began to think, surely it's not that.  Surely it's all a game.  He isn't really this or that... I tried to convince myself that it couldn't possibly be true.. The doctor was going to come out and tell me, lady you are silly.  There is nothing wrong with this kid and he is seriously playing you because he just doesn't want to do school.  He is a smart kiddo and he's had you fooled.  I tested him and he excelled on everything.

As one child after another came in for their session I saw traits in them that reminded me of my son.  Still, I denied it.  The doctor finally finished his testing and had me schedule for 2 weeks out to come back in for results.  See, he didn't immediately see anything wrong or he'd have told me then, I rationalized.  Deep down, I knew better.  I stuffed it deep down.  I ignored it for the next two weeks.  I asked them to please call me if they could get me in sooner.  I waited for that call.. it never came.  As our appointment came due, I began to get very nervous.  I didn't want to go.  Although I knew it would be better once we had a diagnosis and knew what to do, I didn't want that label.  I didn't want it to be true.

The day finally came and I was a nervous wreck.  I drove to the office, checked in with the receptionist, and immediately started crying as they called me back.  The doctor asked how I was feeling.  I told him nervous, anxious, scared.. he said of course all those things were typical.  I asked if it was typical to cry before they even say anything and he was silent as he directed me to the box of tissues.  We sat down and the folder was opened as test after test came out and result after devastating result was given.  I could barely see through the tears.  I probably went through at least half the box of tissues.

If you have followed along long or even read back through our posts, it's been almost 2 years since we got Adrian.  I remember standing in the courtroom with him and the judge saying he was retarded and making sure we were aware of it.  I remember the anger that flooded me at that moment and how I wanted to scream at the top of my lungs, HOW DARE YOU!!  My son is NOT retarded, you never gave him a chance. The emotions last week as I heard from the psychologist the diagnosis of severe autism and MR were much more somber.  I felt horrible.  They weren't lying.

I felt as though I had been failing him and pushing him all this time to do things he was not capable of doing.  As the doctor told me one thing after another that he did not expect Adrian to ever be able to do, my heart was breaking.  I felt as though I was loosing another child.  I felt as though I deserved the worst mother of the year award that I had not seen these signs for what they were.  I felt even worse that I had NO CLUE about Autism.  I was angered that the doctor said MR.  I know he didn't mean it to be taken the way I took it but I felt as though it was said as though it was something to be ashamed of and whisper about.  I really don't know what else to say.

I have really struggled with how to handle all of this.  I love my kiddo just as much and this doesn't change a thing about how much we love him! We still haven't heard back from the doctor on what is next or what specialist to go to.  We are waiting for the final written report for school and all that jazz.  I know this has come to an abrupt ending but if you would, please pray for us as we dive into this new adventure and work to bring God glory and to raise awareness of Autism and support for the families who deal with it.


  1. So very hard! Alicia - I'm sorry. I wish I had loads of encouragement to pour out on you. What I do know is this: the diagnosis does NOT change who sweet Adrian is. He is still Adrian. A diagnosis only helps you to get the services he needs. Although it's hard to hear, this diagnosis WILL help him. Labels are hard, I know - but sometimes our kids NEED those labels. It will be okay - and now that you know, you can work with Adrian more specifically. Knowledge is power!

    I'm sure you're already learning this - but the Autism community is VERY supportive and welcoming of new families. It would probably be so helpful and encouraging to join a support group or something similar - to hear from families who have 'been there, done that'.

    Praying for you, friend - this stuff is HARD, no doubt about it. CALL if you need to chat!!!!

  2. praying that you get the support and answers you need and God's comforting arms around your family.

  3. I'm sure that words will not ease your pain right now, but the one thing that stood out to me in this post, was the DR. giving you a list of things your son will NEVER do. Only God knows what the future holds and if you knew the amount of bad predictions doctors made, you would just throw that comment aside. God can do anything with those he creates. Keep your eyes on Him and He will guide you and surprise you.

    I pray for peace as you walk along the road with your family.