Take the Credit

I hadn’t slept, wasn’t eating well, and quickly I had found myself spiraling out of control, all stemming from a small mistake the county made almost 2 years ago.

In short, Lucy should have been able to receive Medical Assistance through TEFRA (state funded medical assistance for children with disabilities) the moment that the county deemed her “disabled.” But instead of leading us in that direction and completing the paperwork necessary for TEFRA, Lucy qualified for MA based on our income.  And now, two years later, since our income no longer qualifies under those guidelines, she will have- quite a lengthy- lapse in coverage until the paperwork can be completed and reviewed by SMRT (state medical review team).

Unfortunately for us, this goes so much more beyond basic medical insurance.  Lucy’s MA covers her twice-weekly visits with her PCA (an out-of-pocket expense of $30+/hour) and her upcoming visits to the Child and Family Psychology Center.

The moment I received that letter in the mail is when the world began crashing down, a whirl-wind of circumstances beyond my control that feels like elephants standing on my chest.  And of course, when it rains IT POURS.  The constant worry of “how am I going to pay for this?” among many other woes, I was completely ignored and hurt by someone who I held in such a high regard- a constant reminder of how inadequate and unworthy I am.  And the downward spiral of life continued.

Soon I found myself truly wallowing each day, wearing my uncertainty, hurt, and sadness on my sleeve.  I was embarrassed by my sludgy attitude, but nothing seemed to help pull me out of the pit.  You see, that pit of anxiousness is where I fall, and instead of pulling myself out and breathing for air, I become totally encapsulated and I let darkness seep in.

One day I received a call from Lucy’s primary doctor.  An angel in disguise, who I’m convinced heard my hopelessness through the phone, asked how Lucy was doing in Kindergarten.

“Oh my gosh!  She’s doing amaaazing!!!!  She’s surpassing every expectation we’ve ever had.  I… well, her whole team, is constantly amazed at her growth this past year.  Her teacher said she’s running out of things for her to read, she’s getting little to no para support in her classroom.  She’s just… she’s just so unbelievable.  She’s the poster-child for early-intervention.  I think of where she would be without all the help along the way and…”

She was quick to cut me off.

“You know, we’ve talked about this before.  While that may be true, I urge you to give yourself some credit.  She wouldn’t be doing so well without you, without your husband.  Believe me when I tell you that this is not always the case.  You’ve worked really hard to get Lucy the things she needs and it’s always worked out.  That wouldn’t happen if you weren’t an exceptional mom.”

You’ve worked really hard to get Lucy the things she needs and it’s always worked out.  

My Type-A Personality often shines in the ugliest ways, while others have to endure my wrath when I am (or feeling like I am) not in control.  But it wasn’t until that phone call that I realized that’s the nature of the beast.

Paperwork, deadlines, phone calls, evaluations… the county, the state, the school district.  This shit wouldn’t get done without my obsession with, for lack of a better term, getting shit done.  

I think I fixate so much on how Lucy is changing my life… about the positive ways she’s impacted me.  I give her so much credit for living in a world that doesn’t always make sense to her, for working hard on tasks we often take for granted.  I give her so much credit for her infectious smile, love, and happiness that changes the way people view others with disabilities.

I fixate on her so much I often forget that I, too, have role in her success.  I play a big part in who she is and who she will become.  Which is a terrifying and beautiful honor all at the same time.

The truth is… it will all be fine in the end.  Will I worry myself into hives and sleep deprivation? Likely.  But that doesn’t take the fight out of me.  So rather than focusing on the unknown and the worry of what is to come… I’ll let the Beast take over and fight for what she needs and what she deserves.

I am Mama.  Hear me roar.


This is Harder Than I Thought

I’m tired.

I’m angry.  I’m a little bitter. A lot lost. I’m feeling overwhelmed and totally inadequate.

I’m also Lucy and Eleanor’s mother.

Which is harder than I thought.

Late last week, I raved about Target and their gender neutral clothing line available in the Girl’s section.  While Lucy sat in the cart, I held up each shirt on the rack.

“This one?

“No.  It’s beautiful! But I don’t like beautiful.”

I showed her every option, even when I knew she wouldn’t choose it because 1) she sometime surprises me (anyone remember the panda pants!?) and 2) I like to keep all options open.

Clothes shopping is terrible for her; lights, sounds, textures… and, most of the time, only clothes that she’s not interested in.

(Side Note- this question gets asked of me a lot: If you’re so open to her wearing whatever she wants, why don’t you let her buy ‘boy’s clothes’? Lucy is built like a girl.  She is also very tall and thin.  Shirts from the boy’s section are typically too wide for her.)

And then there it is!  I picked up a dinosaur shirt and she screamed with absolute glee!

“Mom! Is that a boy’s shirt?”

“I dunno, Luc.  Maybe.” We specifically don’t use the terms ‘boy’s clothes and girl’s clothes’ with her because it’s becoming increasingly harder to keep those barriers open and allow her to simply be comfortable in whatever clothing feels right for her.

She came home with the shirt.  She kept among her most precious items for a few days before putting it away in the top of her dresser drawer.  This morning, Devin was helping Lucy get dressed.

“Lucy, do you want to wear your new dinosaur shirt?”

“No! I can only wear it in summer.  If I wear it to school, everyone will know I’m a boy.”


Do you see what I mean? This is hard.  It makes me feel sick when I think about it.  I can feel my face becoming ghost-like and my heart tearing into little pieces.  We are doing the best we can, Devin and I.

I love her so much.  I love her if she is a boy or a girl or a fricken chimpanzee.

“Lucy, do I love you if you’re wearing girl’s clothes? Or do I love you when you’re wearing boy’s clothes?” I asked.

“Ha! Both. You always love me.”

My situation isn’t that different than yours.  We all have the same objective as parents- to support, aid, comfort and love our children to help them find themselves. That’s all we want as parents!  We want to help our children become the absolute best they can be.  So believe me when I tell you, I am fighting.  I am praying.  I am hopeful I’m doing enough to ensure she is loved no matter who SHE decides who she is.

We do not get to decide.  Society does not get decide.  We are simply lucky to be living in this world beside her, as she teaches us about love and patience.  She teaches about human interaction, love without words, about believing in one another.

I don’t know how to do better at this point.  I don’t know how to tell her that she can be who she is, wherever she is.  She doesn’t have to pretend to be someone she’s not.  It’s a constant struggle and her unwillingness to be open with people is a constant reminder that I may not be doing enough.

There are people who think we make this up, by the way.  They really believe that she’s ‘just going through a stage’ or they tell me they’ve known girls who’ve ‘been real tom-boyish too.’  We’ve lost friends because of this.  And as much as I want to say “I don’t care what anyone else thinks”…. that’s only true to a point.  Because though I won’t let it affect my life and how I parent Lucy, it matters if Lucy feels supported or not.

Gender Dysphoria exists in children.  Gender Dysphoria in those with Autism is more common than you think.  Their minds are often very black and white while gender remains a strong gray area.  Society decides how boys feel, look, behave.  What boys like and don’t like.  Society tells us what girls will think, what she’ll be when she’s grown up, and how she should dress.  We have been so brainwashed into gender stereotypes.

I don’t know how to help Lucy feel confident in who she is and who she is becoming.  I don’t know how to live in a world that doesn’t accept her for who she is.  But I promise you that I am fighting for every opportunity to make sure she knows she is loved, that she is supported, and that she was meant to be Lucy.

If you have been supportive of Lucy, thank you.  We understand that it can be a hot-button issue to talk about, but I encourage you to be open.  Listen.

From my heart to yours.