Tuesday, August 4, 2015

When the worries go away

Max is sleeping like he usually does: On his side, one hand resting on a shoulder, the other curled beneath a pillow. There is no greater special needs parent therapy for me than watching him at rest. 

He looks even younger than he does when he is awake, his cheeks puffed up. The years of Little Max return to me. Watching the kids sleep is the closest I come to going back in time and seeing them once more when they were little.

Asleep, Max's body is relaxed; often when he's awake, his fingers and arms tighten, the cerebral palsy doing its thing. Gently, I'll pick up one his hands and hold it in mine, the warmth infusing me with peacefulness. I'll listen to his breathing, soft and even, and feel grateful he's getting good rest. His body works so hard. 

Lately, I've been lying awake in bed in the middle of the night, thanks to pregnancy insomnia. My mind inevitably drifts to Max, and the worries that bubble up by day emerge in full force. He wants to speak so badly and while there have been some articulation improvements, he still struggles with a lot of consonants. The best I could convince his school after that dismal IEP encounter with his speech therapist was to add one articulation goal to his IEP; for the most part, she is focused on language and his speech app. They are the most facile means of communication for his education, she and the district have told me. But then: What about the rest of his life? What about the fact that he wants to express himself by talking?  

Max's chewing is not progressing much—he mainly eats soft foods, crunchy or chewy ones aren't feasible because of chewing/oral-motor coordination challenges—and it's looking like I need to add feeding therapy to his repertoire of therapies, and perhaps enlist an advocate to make sure the school is doing its part to prevent him from choking. 

I worry about the insurance coverage, as we've hit the proverbial "You only get 30 speech therapy sessions a year through your coverage" wall and now we have to appeal. 

I worry about making sure he gets enough attention once the baby arrives. There is only so much of me and Dave to go around.

When Max is sleeping, though, I'm not thinking about any of that. Because he is just a sleeping kid and I am just his mom, focused on the beautiful child in front of my eyes. 


  1. Those middle of the night demons are the worst. One day at a time, as you've always done! You are a fierce advocate for Max and will enable him to reach his full potential. Love you!

  2. Worries are a natural part of being. They shouldn't be, but they are.

  3. Ugh, pregnancy insomnia... I feel ya. Sorry you're going through that.

    Is secondary Medicaid an option for you for Max? In my state there's a Medicaid program for children with disabilities, as well as various waiver programs where income is not considered. Secondary Medicaid covers everything we pay out-of-pocket through our regular insurance plan, and it would pay for those extra therapies. Also, can you do at home speech therapy (in all your free time, lol)? Private therapists are so much better at understanding real world problems and finding solutions - you might be able to find someone who won't just throw in the towel.

    Good luck. Hope you sleep tonight.

  4. Thank you - this made me teary. Watching them sleep is the BEST therapy. When V was at her littlest/sickest, I never dared to go in her room once she fell asleep because I was too afraid I'd wake her and start a round of vomiting or one of our other issues. Now I sneak in every night before I go to bed, to watch her for a minute, because I can and because it feels like reclaiming a teeny bit of what we lost. And yes, it works wonders on those late night fears. xo

  5. After 8 years with a G-tube, my son (now 14) is still at risk for choking. His chewing is still limited and it also affects his food choices. With the help of a lawyer, our school district has a qualified person (Heimlich and CPR certified) watch him during lunchtime - not just the usual lunchtime staff. At the time, not all para-professionals had this training. The district head nurse decided to train ALL staff - not just those interacting with my son. Makes sense! I feel better, too. Cathy


Thanks for sharing!

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