Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

A Day in the Life of a Parent of a Child with Special Health Care Needs

01/10/2017 | Published by: Leslie Curtis

As parents of a child with special health care needs, we have all had those days that never seem to end. This past week, there was just such a day. I'm still not sure how I fit in my work duties around my parenting duties. Puberty, crazy weather, and another ear infection threw everything into a tailspin.

It all started last Monday as I was frantically getting Jac, my son, ready for school. Like most moms, I was preparing breakfast, getting backpacks ready, and trying to throw some coffee down my throat. I had a restless night with little sleep from my beloved child and really needed a caffeine jolt so I could function at my job. During the terrible sleep-deprived past weekend, I sent emails to his doctors (who are in the process of adjusting his medications), so I knew I would be getting a response from them sometime during the day.  

I keep a daily list of errands and phone calls—and on Mondays, the list is usually extra long. The weather had been rainy, overcast, and as a result, Jac's asthma was terrible. So we were now needing breathing treatments at home and at school. Of course, I could only find one mask and nebulizer kit. The breathing treatment medicine I had at home had reached its expiration date (of course) so that meant an extra phone call to his regular doctor for a new prescription. The school had to have a current medication to give him. 

By mid-morning, I had received three emails from his teacher, a couple of emails from the doctor, and a call from his primary doctor about lab results that were needing to be talked about. 

I still needed to find a breathing treatment mask, go by the pharmacy to get the new medications that had been called in, and then get them all to the school nurse. 

I made a quick trip by my house and of course there was a letter regarding Jac and his placement on one of the waiver lists. I assumed that was a good thing, but then realized I had always been told to call one of the case managers to discuss any concerns. 

Be sure you are making the right decision for your child. I needed to do that, too. 

Long story short, I was able to pick up the medications, review the lab results via email, call a case manager regarding the new possible waiver program, and then take the medications and mask up to the school.  

I kept thinking late into the night: Is this the life of a normal parent? Did I even eat today? Did I go the restroom today? I still am not sure about some of those answers. 

What a wild ride we are on! 

This website has lots of information on parenting and its challenges. Have a look at Navigating Daily Life.


Read More Posts from Family Support

When She Says Jump

The mother of a child who is nonverbal tells the story of a day when her daughter made some crazy demands, and the mother obliged.

You’ve Got a Friend in Me

After many years of the isolated, parallel play, my son finally discovered friends.

That Mom

One mom tells her experience of being “that" mom who calls every day, finding out what is being done to help her daughter.