Autism Speaks…Our Story

Today is World Autism Awareness Day and today is the day I will share something quite personal.  I could have started this post with a picture of all of the dirty dishes in my sink or perhaps the oodles and oodles of laundry that needs to be folded but instead I am choosing to share our journey up to this point in hopes of offering strenght and hope to others out there that may be wondering the same thing about their child that we did.

So this post has been swirling in my mind for months.  I hesitate to write it…so I beg you…please don’t judge.  This is not for pity, it is not to exploit my child, nor is it to make myself feel better, but to create a spark and an AWARENESS.  A spark in that one mommy or daddy who is out there that is questioning their gut.  Their gut is telling them something is a little “off”….a tad left of center about their own child.  I hear so many stories of parents that “know” something is a little different about their kiddo but can’t muster up the courage or strength to seek out help or ask that pressing question.  So they wait…they wait because they are too afraid to go after that feeling of fear that their gut may be right… don’t wait!!  You know your gut, you know your kids and you do no harm by seeking out knowledge.  

A few weeks our oldest son (let’s call him B#1) did NOT want to go to school…the panic set in on Tuesday night fearing the day on Wednesday.  I pulled him aside and asked him why he was so terrified to go to school?  His response was this…”the lights…I don’t like the flashing lights.  Oh, and all of the people, too many, too much…too much mom.”

That is what he told me, my heart was broken to hear this.  It was spring picture day at school and my 4 year old was able to express to me the sensory triggers for him.  How could I possibly send him to school when he is feeling so panicked and overwhelmed?  As a parent seeking out what is best for my little guy, I knew sending him to school was the BEST thing that we, as his parents,  could do for him.  He needed to know that even though he was feeling like this, he was going to be OK!  Guess what…he was OK.  He got thru his day and with the support of his teacher, B#1 had a great day at school.

As of right now, B#1 has been diagnosed with High Functioning Autism.  Before the diagnosis, we knew a few things that were concrete, he is beyond BRILLIANT (he is in the 99.5th percentile for his IQ), they have identified him as twice exceptional, he has some sensory issues, his eye contact is not so great, his ability to connect with kids his own age doesn’t really happen, he’d rather play alone, he hyper focuses on socially irrelevant topics that are not age appropriate, he obsesses about details that most 4 yr old have no idea about,  and the list goes on.  Our first look into B#1 that something was skewed was his unreal memory from the time he was 15 months old.  He also had a need for EVERYTHING to be lined up and if things got messed up it really sent him over the edge.  Of course at first we were smitten, WE had given birth to boy genius, right?  But as we heard baby B fire off his ABC’s out of sequence via flashcards at 16 months, we knew there had to be more to it.  A few months later he had his 1st episode to what seemed like a panic attack.  Over the next couple of years, more and more things became apparent to me & my hubs and we had to take action.

Since he was verbal, and still so young, autism was never mentioned.  I started doing my own research and once his school year started we urged for testing.  We wanted to rule out a variety of things.  We thought he was just smart and maybe a little socially awkward and noticed he struggled with transitions.    All of the tests showed us a much different story.  He was in fact smart, much smarter that we ever imagined.  He was delyaed in social and emotional development, but the shocker was that he tested at-risk for autism.  The school can’t do an actual diagnosis, but strongly recommended that we seek the help of a psychologist to help our little guy and to get a better idea of what we were dealing with.

So that is what we did, we enlisted an amazing psychologist to work with us.  We want to make sure that all of his evaluations are super duper comprehensive and that he is receiving all of the help he/we need.

We are ok…B#1 is ok…the pain or fear lies in the unknown for now…but the happy is knowing we caught this early.  His prognosis is great and we can only hope at some point the “label” will go away but for now we are doing evenything we can to help him with his struggles.  Sharing this with you was a CHOICE…and I wanted to share our story from the beginning.

That is all we know right now, and now that I have shared this,  I invite you to follow in on our journey.  For all of you that just might have a similar feeling about your kiddo, I encourage you to seek out answers to questions you may have.

xoxo~rebecca

For more information on Autsim visit http://www.autismspeaks.org

 

Comments

  1. kristy says

    Thank you for sharing your story R. I know that took an enormous amount of courage and thoughfulness. A diagnosis like this is indeed an unpredictable journey. Just know that so many people out there hear you, understand and are always here for you. You are an awesome Mom. xo

  2. Alejandra Morin {The Marshmallow Studio} says

    Your post brought so many memories back Rebecca. I pretty much just went through everything you just said a few months back with me eldest. After a full year of intensive therapy we sent him off to school. He had a rough start but now is doing good. Seems he’s definitely not autistic after all but he does have some social anxieties that we’re working on. His speech is slowly improving as well. My second boy starts therapy today for speech and other minor stuff. It’s tough to see your children struggle but we must be strong for them and push them so they can become independent and productive adults later in life. Thank you for sharing your story. XOXO, Ale

    • Rebecca says

      Hello my sweet friend!! Thanks for sharing your story!! Glad to hear things have turned the corner for your little guy!! All we can do is push forward and get these littles the help they need!! xoxo

  3. Nikki says

    Thank you so much for sharing your story, Rebecca. I have a friend who is struggling with her son, as well, in a very similar way. There is something just a little “off” and he doesn’t seem to fit any particular mold for a “label”. He’s just a little different, a little delayed, a little awkward and exceptionally sweet and kind. I think you are so right to encourage parents not to be afraid of seeking help. It is the unknown that is scary. The known can be dealt with. 🙂

  4. Gina K says

    Becky,
    What a beautiful article for such a difficult topic…but then, I think of you and that’s what makes you so very special! In the worst of times and best of times, you have a smile and out look that lights up the world around you, more than anyone else I have ever known. You have never diverted from that in the 20+ years I have known you. My heart hurts for you in those helpless “mommy moments” that we all might be able to relate to. Sharing your story will help others….thanks for making the world just a little more brighter today. You are an amazing person and mother! ~g

  5. Leah N says

    Hugs to you dear friend and to your amazing boys! They are each going to move mountains in this world. I can’t wait to see it.

  6. Kori Clark says

    Rebecca! You are such a beautiful soul and I can only imagine your little ones are all just as beautiful! Thank you for sharing your story and urging people to gain knowledge and pursue answers when your mom gut tells you too! This is a story I hope a lot of people get to read and I hope it brings more awareness and urges parents to act! xoxo

  7. SC says

    I know exactly how you feel. We have a now 9 year old boy, who I knew from the very beginning was a little different than our 4 older kids. We questioned to our Dr. many times, but he didn’t have a lot of the typical red flags for autism. So we waited and kept asking and waiting for things to work themselves out. Finally I decided to do something and we had testing done and found there were issues. There are some wonderful, caring people out there with a lot of tools and knowledge that helped us be able to help our boy. Lots of OT, speech, special needs preschool, etc. later, he is doing much better, actually doesn’t even test on the spectrum anymore, but still has a lot of issues. Anyway-you are SO right. Go get some advice and some testing done immediately if you think there could be problems. I felt like we wasted many precious months waiting-months that could have been used to help him move forward.

  8. Carrie, A Sweet Spot: Home says

    I absolutely love that you shared this story. When my son was your little guy’s age, he really struggled with sensory issues. Thankfully, as he’s gotten older, the symptoms have decreased dramatically. I know that feeling of something being “off” and it’s one of the scariest feelings I’ve ever felt…the unknown is terrifying! Your son’s a lucky boy to have you as his mama!!

  9. Rebekah {A Blissful Nest} says

    Rebecca I just adore you and you are such a strong lady! We are our children’s best advocates in health, strength, love and the struggles of life. There is no one else to fight their battles. It is us. I gladly take this on and would fight (am fighting) for the health of Lauren. I had to “beat up” some doctors last week and it made me feel like I was taking action to people who may look at my daughter as just another case. We are so close to figuring out why Lauren has been so sick and finding ways to make her stronger. I know you will do the same for your little boy. Us Rebecca/kahs are strong cookies! Hugs and much love to you and your boys!

  10. Dawn says

    I read this early this morning and have been thinking about you, your family and others affected by Autism. Hugs to B#1, you, your family and the millions of others dealing with the “unknown.”

  11. Melisa says

    Way to share your story my dear friend. Being his advocate is the best thing you can do and I love your attitude. I look at my own son thinking…this is who he is and it’s what in part makes him awesome. Remember that when the road gets rough. You have an amazing family! xo

  12. Ginny says

    Rebecca, I just came across your story. You are so brave to share your struggles with your son. He sounds like a wonderful young man, who is so fortunate to have you to support him. My youngest daughter has a passion for working with children with Autism, wherever they are on the spectrum. She currently has 12 students from non-verbal combative to high functioning children like yours. The progress can be very slow, but the improvements can be remarkable.
    My thoughts will be with you. Hugs!

Leave a Reply

Your email address will not be published.

KEEP IN TOUCH...MMMKAY?
Design, DIY, Parties and more...straight to your inbox!
We respect your privacy.