Dear Mom in the Waiting Room

November 2, 2016

Juicy-FruitI see you there.

In the corner.

Trying to pretend you’re not here.

That you’re not at a pediatric rehab facility with your child.

Trying to deny that the flapping, toe walking, and self-injurious behaviors aren’t autism. Trying to fix him without knowing what broke him.

I hear the determination in your voice when you tell that therapist that your child doesn’t have autism. I feel your abject terror at the idea in my soul.

I have some things to tell you. Pull up a chair and let me hold your hand. I was in your shoes nine years ago. My child, who had been perfectly developing ahead of schedule, regressed. I spent almost a year insisting he couldn’t possibly have autism because that list of symptoms they pick from were all supposed to start before age three — and he was older than that.


I demanded the neurologist diagnose him with acquired aphasia so that I could finagle getting insurance to pay for ABA therapy. After all, my insurance (at that time, they’ve since improved) wouldn’t pay for ANYTHING related to an autism diagnosis. So if I was going to get him help, we had to be creative.

I know now that as soul-crushingly difficult it is to process a diagnosis of autism, it actually will help your child get the services they need. In most states that diagnosis is the start of everything that you are going to need for the next number of years.

I hear that therapist over there begging you to get a diagnosis. She’s doing it not because she wants to label your kid, not because she’s trying to hurt you, and not because you failed. She’s doing it because that diagnosis is going to open the doors for you — doors to Medicaid waivers that will pay for every therapy under the sun; doors to early intervention through the school system that will get you in-house treatment now; doors to get you respite care — because you will need it.

I see you wrapping yourself tightly in the blanket of denial. Because as long as there’s no diagnosis, you can avoid the heartache that comes from having a child with autism. I am here to tell you that a diagnosis will not change your child. It will not make him any less the amazing human being that you brought into this world. It will not make you love him any less — in fact, in our experience it’s made me SO incredibly in awe of how hard my son has to work for every single tiny inchstone. It will not identify you as a failure.

I will share with you that the diagnosis will change your life. Some days are horrible, and some are amazing. You will meet some of the most astonishingly awesome human beings on the planet. You will realize that this journey is different for every one of us and that when we walk with each other when we can, we share the struggle. You will learn how to be your child’s best and strongest advocate. Teachers, therapists, and medical professionals will learn they cannot bullshit you and that you know the law. You will not walk alone — there are many of us, and we will help you.

So, mom in the corner of that waiting room, please listen to your child’s therapist. The longer you spend in denial, the longer you wait to get on the waiver, and the longer your baby goes without appropriate therapies.

~ JuicyFruit

For more by JuicyFruit, click here.


Pin It
This entry was posted in Blogs by Thinking Moms' Revolution, JuicyFruit and tagged , , , . Bookmark the permalink.

11 Responses to Dear Mom in the Waiting Room

  1. Hans Scholl says:

    REPEAL sb277

    Senator Pan you are finished !

  2. Beginning therapies has created such improvement that to me my daughter is miraculous. She is kind and attentive to others. And bless her, she struggles so much with academics that school is too hard but somehow she still manages to smile. She is only in the 2nd grade and sadly “hates school”, because it is hard. But thankfully with all he help she started to receive from 18 months when she was not even sitting up by herself, she finally started to walk at 28 months. Then she started to talk. We see three therapists for her many needs, physical, occupational, and speech. She does progress but oh so very slowly and with ad nausea-um, repetition over and over and over again until a skill can finally get laid down in her brain’s architecture. It is a struggle but oh so worth it. I love her and only want what is best for her as I know this parent in the waiting room does too.

    Life is hard enough and life is harder still when a child has been vaccine injured, that will improve as a diagnosis is reached and the family and child can begin to access resources to help. I wish you well in your journey. I understand, totally, and because of that started to write a blog about my journey. It helps to write about what I have learned as I go along. You will find what works for you, too. Let this community pitch in…be a good listener, and breath.

  3. annie says:

    …..and for heaven’s sake please stop vaccinating!!!

  4. Jasmine Mealy says:

    Also, if there is a way for me to more easily decimate this survey out in an easier way- let me know!

  5. Jasmine Mealy says:

    Hello! My name is Jasmine and I am a senior industrial design student at Philadelphia University. For my thesis project, I am creating an assistive wearable device for children with ASD with the goal of preventing ASD related wandering.

    If anyone would be willing to fill out a survey for me- whether your child has wandered or not, I would highly appreciate it!

    Here are the questions:

    Child’s Name:
    Child’s Birthday:
    Your Name:
    Your Relation to Child:

    1. I’d love to learn a little more about your child! What are his interests? Where does he like to go? Does he have a favorite toy? Use the space below to share any fun information or pictures* of your son having fun ☺!

    2. Please explain your child’s diagnosis and the characteristics associated with it.

    3. Please describe a typical day. Are there specific times of day that are especially challenging? If so, please describe. How does your child’s ASD affect their daily life?

    4. Does your child require special assistance at home or at school? Do you have any assistive devices or tools you use at home to help your child?

    5. Has your child ever shown signs of wandering associated with Autism Spectrum disorder? According to some studies, children with ASD are 4 times more likely to wander into dangerous situations compared to children without ASD. If this has been an area of concern, please explain any specific situations or any precautions that your family has taken to prevent wandering,

    6. Please use the space below to add any comments that you would like to add that might not have been covered by the questions above.

    Thank you so much for your time. I look forward to hearing back.
    If you would be willing to talk further either in person or via skype or a phone call, please let me know! I can be reached at [email protected] if you are interested.

    *Our professors strongly advise us against using stock imagery from google or elsewhere. So any original imagery I can garner- the better!

    My email address is [email protected] for anyone who would like to fill out the survey and send it to me that way!


  6. peter says:

    join andrew cutler chelation think tank
    i recovered my son

    • Erin says:

      I actually can empathize with the woman you are speaking about even if I cannot relate. I really really wanted any sort of inkling as to what was different so I was very glad even if we did just get a diagnosis of PDD-NOS at the time. It has been absorbed by the autism diagnosis so that has been a blessing. I know it is strange to think of it as so but it really is the best thing you can do for your child is to start the ball rolling sooner rather than later.

    • Erin says:

      Woops I didn’t mean to reply to you, my apologies 🙂

    • Meghana says:

      Hi Peter, my son, 8, is on round 12 ALA. how old was your child when you started acc and by what age did you recover him? I need hope as my son is very minimally verbal

    • Hans Scholl says:

      Please provide the link Peter . tks

Leave a Reply

Your email address will not be published. Required fields are marked *