White Rabbits, Special Needs Parenting and Anxiety

...Delayed, Apraxia, Autistic, Nonverbal, Hearing Impaired' IEP, ABA, OAE, ABR, APD, ANSD, ASL...

Round and round those words go. Everyday, Everytime I stop. In the afternoon lull when Charlie naps. While on hold for one doctor or another. In the quiet pre-dawn hours of another sleepless night. As I smile, encouraging her babbles, when we play. In the moments of shame when I lose my temper. In the choked back tears as I watch her struggle to interact with peers before giving up and deciding to play on her own. Like the White Rabbit I am stuck in my anxiety, its become my mantra.

'Don't worry, she'll talk when she's ready'.

Haha, don't worry. Anxiety is as much a part of me as my brown eyes and freckles & just as inherited. If you've met the incredible women of my family you totally get what I mean. 

I worry because we don't have answers. I worry because we just have hints. I worry because there is Google, WebMD & the terrifying pictures of 'what ifs' they paint. I worry that the choices we've made are the right ones. I worry about her safety. 

The last one makes it hard to breath, to think, to speak at times. It casts a shadow on every moment spent away from the safe haven of our home...at the zoo, the mall, the park. It makes  the thought of leaving her with someone else overwhelming, even when its with a family member or friend I trust implicitly. It ruins silly movies like 'Finding Dory' because it is the animated embodiment of my worst fear.

Usually I keep this paralyzing fear in check, tucked away deep inside like a shameful secret. Being a parent of a child with special needs requires your A game everyday. My daughter needs a fierce warrior mama ready to fight and advocate for her at all times.  She doesn't need the ugly and uncomfortable ball and chain that is her mother's anxiety holding her back.  So I hide it behind busy schedules fueled by coffee and nervous energy. I drown it in wine, sarcasm and cursing.  I hide it until I am alone then its....

...Delayed, Apraxia, Autistic, Nonverbal, Hearing Impaired' IEP, ABA, OAE, ABR, APD, ANSD, ASL...

Decisions Decisions

The level of frustration right now. It is beginning to feel like the entire system is set up against Charlotte's future. 1001 hoops to jump through, forms for days, so many phone calls I have a crick in my neck. The nonstop negotiating and begging for appointments and coverage. The fact that some person in an office that has complete use of their senses gets to determine if my child's ability to hear and speak is 'essential' is the most difficult part of this all to swallow. That ASL is 'an acceptable form of communication' despite the fact that the general public, myself included, has no idea how to use it. 
Coping with this is the most alientaing
Pity Post over, climbing down off soap box and back into mama bear shoes.