Friday, June 15, 2012


I won’t lie, friends…I’m not in a great place this evening.  I’ve been doing a lot of reading and thinking about what our next steps with Ben should be.  ABA therapy.  Social Groups.  Occupational Therapy.  There are so many successfully proven interventions that exist in our world, created and implemented by wonderfully brilliant and compassionate people.  I have no doubt in my mind that taking these steps will only enhance Ben’s life experience as he progresses through school and into adulthood.  I welcome the opportunity to introduce him to the advances in Autism Spectrum treatments.  For him and for our family these are good things…things to be thankful for.  And while I am appreciative to be where we are now, there is this biting at my heart.  The bitter taste on the back of my tongue...residue from missed early opportunities.  It's a nerve that won’t calm.  A flame that has singed my soul and continues to burn.  And what I keep coming back to is the “why”.


·         Why are people FINALLY seeing Ben?  Why now?

·         Why didn’t they see him when his father and I knew he had a speech delay?

·         Why didn’t they see him when he was extremely physically reactive at a very young age?

·         Why didn’t they see him when he wouldn’t respond to his name?

·         Why didn’t they see him when he was constantly running away?

·         Why didn’t they see him when he appeared to feel no pain or show any fear?

·         Why didn’t they see him when we told them he couldn’t overcome changes in his life?

·         Why didn’t they see him when we said he can’t handle loud noises?

·         Why didn’t they seem him when we swore the slightest drop of water on a dry shirt could send him into a meltdown like no other?

·         Why didn’t they see him when we said he’s not making any friends?

·         Why didn’t they see him when I told them he’s not enjoying school?

·         Why didn’t they see him when the teacher said he’s extremely emotionally reactive to classroom transition? 

·         Why didn’t they see him when I asked them to evaluate him for Autism?

For two years I knew.  For two years I let doctors, psychologists, psychiatrists guess.  I let them put him on medication.  No therapy.  No real help.  Two years of negative feedback in school.  Two years of my Ben thinking that everyone hates him.  Two years of him believing he is a failure.  Two years of thinking he is a bad kid.  I let that happen.  Because I believed the doctors when they said:

Ø  He’s just a boy…boys are more aggressive.

Ø  Must be the ear infections…that’s why he’s not talking or responding as much as he should.

Ø  Maybe he’s depressed.

Ø  He probably has Oppositional Defiance but it’s really too soon to tell.

Ø  If he was Autistic he wouldn’t be making eye contact. 

Ø  He’s grieving because of the loss of his Papaw.

Ø  Ben’s just a perfectionist.

Ø  He’s defiant and his classmates are scared of him.

Ø  If he was Autistic he wouldn’t be as verbal as he is now. 

Ø  He’s stubborn.

Ø  He’s like his mother.

Ø  He’s like his Papaw.

The last two points I can attest to be true.   I can’t be mad at those comparisons/explanations/excuses, rather I am proud.   He certainly does match my determination and tenacity to the ends of the earth…or my patience.  Whichever comes first.  And to compare Ben to the great man that was my father-in-law is nothing short of an honor.   I can only hope to raise Ben to be the man his papaw was. 

To the practitioners we have interacted with over the last two years…who have fed us the remaining excuses on my list above…I say, “screw you”.  Have you not heard me?  When I told you about each one of these things they weren’t in seclusion.  They were in addition to every other thing on this list.  Can YOU not put puzzles together?  Do you not understand Autism?   Is it THAT hard to simply suggest we have him evaluated?  Assessing him for eight hours for everything else under the sun BUT Autism made sense to you? 

Instead we’ve wasted two years on a rabbit trail only to land where I knew we were in the first place.  In those two years my son’s self-esteem has plummeted.  In those two years I have blamed myself for every parenting mistake in the book.  I spanked, grounded, yelled, segregated, ignored.  I let his principal paddle him.  To this day the thought makes me bawl.  I can only imagine the thoughts going through my boy’s mind…the pain in his heart…when he received those swats.  I gave the green light.  I was willing to try anything and everything to make him “right”.  To make him “better”.   God damn it.   

I do realize we’re making the right moves now and that is what is important.  I realize I should be thankful that we DO have answers and we HAVE met a wonderful doctor who DOES see Ben.  But I’m wallowing right now…I'm allowed.  And the tissue box is running low.  I have to release the venom if I’m ever to move forward.  If I’m ever to forgive myself.  I have to.  And I will. 



  1. It is really hard in the early years to diagnose all of those social issues. You can not beat yourself up too much about decisions made when you were all trying to figure things out.
    I know this because of the less difficult struggles I have had with getting my boy who has ADD diagnosed.
    Wallow in the anger and frustration and then move on with your new course knowing you have always been trying your best with a very difficult situation.

  2. Release the venom my girl. Yes.
    I'm shaking my head in disbelief. Do not blame yourself. You will, and have fought for Ben like any mother should. He is so lucky to have you. A woman who is strong, eloquent, who can see beyond the 'experts'. YOU will help him find his way. <>

  3. You are so allowed to wallow. You did everything you could and still didn't stop until you found someone who knew exactly what was going on. Such a wonderful mom.....hugs to you.

  4. I asked those same questions. You aren't alone.

  5. The thing I see above all else is that YOU KNEW. You kept going. You tried everything. You aren't a bad mother because everyone else didn't figure it out. You are a warrior mama because you pushed until they DID! Autism is weird. It's different with every kid. Half the people who know Little Chicken either don't think she's autistic or think she'll "recover". She too makes eye contact, she's social, she covers up a lot. She can "pass". But I know. And YOU know your kid. Get that shit OUT of you, because the past will eat you alive if you let it. You are amazing and strong and good. So is Ben. Forward.

  6. I know this story and have a son named Ben. He is 16 now. He has had numerous diagnoses. During the time I trusted the professionals Ben lost all trust in adults, and us. He was bullied and lost his trust in peers. The schools, therapists, Dr's, home interventionists, aides. It was a long journey. We are seeing our Ben in those eyes again. He has forgiven me, he says. I would say to trust your instinct. Even if a professional says different. You know your child. They see a case. I found only a few people in 10 years who saw my child and listened to me. My son now says he wants to be a therapist so he can go listen to all those boys that the therapists say they are helping, but never hear what they are saying. What you do is for love. Truly. Trust yourself, let your love come through in how you talk to him and touch him. He will feel it.

  7. you are an amazing, loving mother.

  8. There aren't a lot of answers to your questions, but I was touched by one: "Do you not understand Autism?" No, they don't. Stats from just a few years ago indicate 1 in 6 children in this country have some type of developmental disorder. Greater than 1 in 100 will eventually be diagnosed with a disorder on the Autism spectrum. That spectrum is constantly evolving as more studies are done. Autism has been blamed on everything from pesticides to vaccines to birth trauma to gene mutation. Your anger is justified, but hard to direct. You are exorcising it for your own sake, and for Ben's, so let it go, and don't allow the poison back in. Praying for you every single day.

  9. No one will every quiet your innervoice again. Forward march...xo love you

  10. You are such an amazing momma. I love you so very much, and admire your strength and dedication! Keep movin forward!

  11. oh my heart is breaking with you. You are on the right path and Ben loves you. We all make mistakes. Our parents all made mistakes. You are just human and you have been trying everything and anything to make it work. You are a hero to me. I wish you could see you through my eyes. And I bet, Ben's eyes as well. so much love to you.

  12. Regardless of what people think, we are not Super Moms. You are allowed to wallow, it is your right.

  13. You are fighting and you are allowed to wallow. You are amazing. You really are. Trust your gut. We are here when you need us. Big hugs xoxo

  14. I have been here. I think it's a normal place to go when you finally have answers.

  15. My daughters are both on the spectrum, as well. Getting that diagnosis, even when I suspected it was coming, was hard to deal with. Having the answers didn't mean I was ready for them-- or ready to deal with what those answers meant. EVERYONE goes through some sort of process-- it's the only way to figure out and make sense of what this new knowledge means to your child and your family. The fact that you are emotional and not numb means that you are on your way to coming to terms, and then you can move forward.

    I have been there. I still go there on occasion. But I am so much more able to help my children now. :)

    I found you on the TGIF Blog Hop. I look forward to following along with you on your journey.

  16. Just found your blog today--recommended by YKIHAYHT, SO glad I found you! Wonderful, emotional, well written stuff. Thank you for sharing. My 10-year old has many academic issues, and the best we get from school is "he has SPRINKLES" of autism spectrum. Augh! I have a nephew who is 15 and has Asperger's, and it's been such a learning experience for all of us. You are inspirational! I will put you on my blogroll and recommend you to others! My blog is, and it's called Flying by the Seat of My Pants. I'd love to have you over! Thanks again for the great reading material!!!

  17. You probably get this a lot, but I truly mean it: I'm going to pray for you tonight, for wisdom, strength and peace. Hang in there. You and your family are awesome!!
    XOXO Susan

  18. Good Job Dear! i enjoyed seeing it,


    If you have a minute, please check out my blog and follow me if you liked it. I'll appreciate it so much! Thanks!

    Blow a Rainbow

  19. Stopping by again to tell you that I nominated you for the Sunshine Bloggers Award. I love your site! Please check out your nomination at
    Thanks again!