Thursday, September 20, 2018

The Job I Never Applied For

ID 67561960 © Bravissimos |

I am technically a stay-at-home mom, but I prefer to think of myself as my son's personal health care manager. It's a job I didn't apply for, but if I had, I imagine the job post would have looked something like this:

Job Title: Personal Health Care Manager

Job Description: The Personal Health Care Manager will perform all administrative tasks pertaining to the health care of a 5-year-old boy with spastic quadriplegic cerebral palsy and take him to all medical appointments.

Regular Work Hours: Almost all the time

On-Call Hours: All the time

Sick Days: Not guaranteed

Salary: $0 (non-negotiable)

Background of Successful Applicant: There is no way to prepare for this position. If hired, just dive right in. ;-)

  1. Fill out formsmedical history forms, developmental history forms, sensory questionnaires, etc. You will quickly become an expert form-filler-outer.
  2. Take kid to all doctor appointments. After each appointment, make more appointments.
  3. Hand over credit card to: doctors' receptionists, therapists' receptionists, pharmacy staff, etc.
  4. HOWEVER, if anyone says the payment they're asking for will go towards your deductible, smile and say, "We've already met the deductible." (Feel free to throw in a cheeky "One ambulance ride will do that for ya!")
  5. Learn the following vocabulary words: ophthalmology, orthotics, pulmonology, gastroenterology, and speech and language pathology.
  6. Learn the differences between a neurologist, a neuropsychologist, and a neurosurgeon. Figure out which questions to ask which one.
  7. Make phone calls to: schedule appointments, reschedule appointments, cancel appointments, request referrals from kid's pediatrician for appointments with specialists, notify kid's school of absences for appointments, and complain to your mom about appointments.
  8. Also make phone calls to: get lab results, argue with the health insurance company, find a pharmacy that has kid's recently prescribed (and difficult-to-find) med in stock, and update your mom on (and/or complain about) all of the above.
  9. Answer phone calls from: doctors ("The lab results are in..."), doctors' receptionists ("Oops, the doctor will be out of town during your scheduled appointment, so we need to reschedule"), complex care coordinators ("I recommend taking him to the following specialists: ______, ______, ______, and ______"), and your mom (she deserves it). 
  10. Learn the meaning of the following acronyms: MRI, EEG, CP, EKG, V/P, IVH, IEP, OT, PT, and WT_ (J/K).
  11. File: (paid) medical bills, doctor visit summaries, therapy reports, and anything else containing a word ending in "-ology." (Except "biology." Or "theology." Okay, don't file everything that ends in "-ology." The point is, you will need to file lots of stuff.)
  12. Take kid to get x-rays. Be prepared to hold down his arms and/or legs while wearing a giant radiation-proof vest with 101 Dalmations on it.
  13. Take kid to get MRI images. For best results, calm kid down in any way possible. Tried-and-true method: lie on top of kid, enter MRI machine with him, and sing "Wheels on the Bus." Good pitch not necessary; you'll both be wearing ear plugs anyway.
  14. Update family's Google calendar. If any week has no appointments scheduled, check for errors. If there are no errors, schedule a family vacation.
  15. This list is not comprehensive. Additional duties include (but are not limited to): taking care of kid, coordinating kid's care with school staff and outside therapists, and managing medical emergencies. If/when feeling overwhelmed by duties, seek encouragement from kid. He will gladly, on demand, clap his hands or say "Go!"

Job Benefits:
  1. Perspective
  2. Increased empathy and compassion, and best of all...
  3. Joy

Saturday, September 15, 2018

What to Say to a Parent of a Child With Special Needs


Maybe you see a stranger with their child with special needs, and you want to make a connection but don't know what to say. 

Or maybe you have a friend or family member who has a child with special needs, and you want to be supportive but worry about saying the "wrong" thing.

Here are some ideas of things to say, based on my own experiences as a parent of a child with special needs:

To a stranger, friend, or family member:

1. "He has the sweetest smile."

2. "I like his spirit."

3. (To a parent of a younger child) "He's so cute/adorable/handsome/beautiful."

4. (To a parent of an older child) "He's so handsome/beautiful."

5. (To a friend or family member whom you haven't seen in a while) "He's made so much progress since I saw him last." 

Even better: Be specific about what area(s) you've seen progress in.

6. (To a stranger) "I have a son/daughter/grandson/granddaughter/niece/nephew with Down syndrome/cerebral palsy/[fill in the blank]." 

Tread carefully with this one: Don't assume you know the child's diagnosis. 

Also, it's often best not to go into much detail about your loved one. If your loved one is much older than the child and is doing well, you could say something like, "I have a nephew with Down syndrome. He's 20 now, and he's doing great." Parents of young children with special needs often worry about their child's future, so saying that your loved one with the same or a similar diagnosis is doing well can give them hope.

7. Compliment an ability you see: 
  • If you witness the child dancing, you could say, "I like his moves!" 
  • If you witness him running: "Wow, he's fast!" 
  • Or if you witness him accomplishing a difficult feat, like climbing up the stairs of a playground structure while wearing braces on his feet: "Wow! Look at him go!" or "Wow, he's doing great!"

8. Compliment good behavior you see:
  • "He's doing a great job sharing his toys."
  • "He's being so patient waiting for his turn."

9. ....or, simply, smile.

The key is to try to keep the interaction positive. Focus on the here and now. Avoid talking about the child's distant future or asking about the child's long-term prognosisunless the parent brings it upas these topics can be scary and upsetting for the parent to think about and discuss.

To someone who has just shared with you challenging news about their child (e.g., a difficult new diagnosis, recent medical incident, etc.):

1. "That sounds tough/challenging."

2. "I'm so sorry you're going through this."

3. "I'll be thinking of him/praying for him."

4. "How is he doing now?"

5. "I'm glad he's doing better." (If he is indeed doing better)

6. "How are you doing?"

7. "Is there anything I can do to help?" 

Even better: Think of something you could do to help, and offer to do it. For example, offer to babysit their other children for free, pick up groceries for them, or drop off a homemade meal.

8. "I'm here for you if you ever need to talk."

The key is to respond with sensitivity and compassion. Again, it's best to avoid asking questions about the distant future or predicting the future (e.g., saying you're sure he'll make a full recovery). Also, just being a good listener can be helpful to the parent.

I hope you found this article helpful. If you did, please consider sharing it on social media; it would mean a lot to me. 

Also, I'd love to hear any additional ideas you have of things to say to a parent of a child with special needs in the comments section below.

Thanks so much for reading!