30 Days in the Life of a Parent of a Child with Special Needs

Before I had a child with special needs I'd see parents with a disabled child and think, "oh, how hard for them." I had no idea how hard it really was. All I thought about was the emotional impact of raising a child with a host of special needs and to a lesser extent, the physical barriers for children in wheelchairs.

I never thought about the variety of equipment required from ramps to nebulizers - or who pays for that equipment and the related medical bills. Most people assume that there is a huge bundle of state and federal money helping to support these children. Not so. We have "supplemental" Medicaid that pays for very few of Amanda's needs. We are lucky to have good health insurance, but there are still many things that we have to pay for privately (incontinence supplies, copayments and emergency room fees, home modifications like ramps, shower chairs, etc.)

I never realized that its impossible for the parents to get a babysitter and go to a movie or out to dinner. If I want to go out I need to hire a certified nursing assistant for respite care at 2-3 times the cost of a typical babysitter.

I never thought about the doctors visits, surgeries and trips to the emergency room. I never wondered who lifts the child in and out of bed, the bathtub, the car... or what happens when that child becomes a teenager or an adult.

Managing Amanda's medical conditions feels like a full time job some days. I have to schedule doctors appointments, fill out forms & drive to appointments.  I make phone calls and do a lot of paperwork as well as juggling carpool, cooking, cleaning, laundry, banking and grocery shopping. In addition to trying to keep Amanda healthy and happy I have to balance things so Danielle can have a typical childhood, despite having to spend days playing quietly in a hospital room at times.  This was our past 30 days:

• Day 1:  Endocrinology appointment for A. (Review of hormone-producing glands that control basic body functions such as metabolism, growth -  in our case, bone growth and quality). Blood is drawn for testing. Sent home with cup for urine sample (ha ha - like that is going to happen since she wears diapers.)

•  Day 2: Pulmonologist (respiratory care) appointment for A to determine whether there is any lasting impact from her collapsed lung. Art class for D.

• Day 3:  Schedule bone density scan for A at Children's Hospital. Get Rx from Orthopedic surgeon for Amanda to resume physical therapy. Respite worker calls to say she will be half an hour late. Kevin has to work from home to watch Amanda so D can go to ballet.
• Day 4: Mail Appeal for Medicaid Denial. The original application contained nearly 100 pages of forms and doctor's reports. Despite containing 17 diagnoses, it was denied because the letter from her psychologist stating that she is mentally retarded and autistic was missing.

•  Day 7: Received a call at 8:20 AM - Amanda has had a grand mal seizure. Meet Ambulance at school and ride to Children's Hospital Emergency Room. Released after a few hours of observation. Respite worker is a no show. Department of Family & Children's Services representative appears at the house at 5 PM.

• Day 8: Make appointment with Neurologist for A. Will need to schedule MRI & EEG.Receive Seizure Action Plan paperwork from school.  Respite worker officially quits. Art class for D.

• Day 9: Try to track down seizure medication Rx sent by ER to wrong pharmacy. Ballet for D - a friend takes her for me so I can be home for Amanda.

• Day 12: Take Danielle to birthday party.

• Day 13: Find prescription! Need to wait for them to order the meds. Drop off Seizure Action Plan and Authorization for Physical Therapy at school for Primary Care Physician's signature.

• Day 14: New respite worker starts (6 hours a week)

• Day 15: Schedule Pulmonary Sleep Study for next month. Schedule Community Service review.   Pick up Seizure medications and PCP authorizations. Art class for D.

• Day 16: Drive to PCP's office to pick up signed Seizure Action Plan and PT authorization. Schedule appointment with Orthotics for leg braces. New respite worker cancels one hour before she is scheduled to arrive. Kevin has to work from home - again - to watch Amanda so D can go to ballet.

• Day 20: Bone Density scan outpatient procedure in the morning. Amanda thrusts to the side so hard while the nurse is inserting her IV that she bends the frame of her wheelchair. Amanda suffers three separate episodes of apnea, hypoxia and cyanosis. Test is cancelled. Review by Community Service Case Worker in the afternoon. Leave messages for Endocrinologist to reschedule test under general anesthesia and with Pulmonologist. Email PCP regarding referral to Craniofacial Clinic.

• Day 21: Picture day at school for Amanda. Complete intake paperwork for Neurology practice. Third respite worker this month starts...I'm starting to feel like I must be a real bitch to work for.

•  Day 22: D to Art

• Day 23: D to ballet

• Day 24: Third respite worker resigns - seriously!?! I'm not even asking them to work anymore - just to sit in the room with Amanda so I can get some housework done or make dinner.  Drive to PCP to pick up paperwork needed for physical therapy at school.

• Day 25: Recived a certified letter stating that it is the "FINAL TECHNICAL DENIAL" for Medicaid. Start scrambling to create more evidence of Amanda's need for services. Enlist the help of her teachers, therapists and aides.

• Day 26: D to birthday party. Spent two hours providing detailed answers to Parent Physical Therapy Questionnaire. Final answer was 6 pages.

• Day 29: Neurologist Appointment. Amanda has two focal seizures during the appointment. Dr. schedules more blood tests, EEG and an MRI. We have to start tracking episodes of staring seizures at home and at school.

• Day 30: Schedule MRI & EEG

What will the next 30 days hold? Well, on Monday Amanda has to go for blood work and an EEG. I know I'll be attending three birthday parties with Danielle and an MRI as well as overnight sleep study at the hospital with Amanda...Poor Amanda, no one ever invites her to a party.

I'm ready, Mother Nature, bring it on!

My mother was a worrier.  I bet I'm the only one who grew up in the 1960s with a set of "Fall Out Shelter" instructions hanging from the door to the basement of our suburban home.   Is it any wonder that  I've had an Emergency Kit since
9-11?

I was able to assemble it mainly from things I already had - they just weren't consolidated. For instance, I received a  fire extinguisher as a shower gift. I've never used it, but I have it. I now give fire extinguishers as gifts. It may not be used any more than a setting of fancy china, but I know that if it is used it will be more appreciated. And it's a gift the recipient will remember long after he or she has forgotten who gave them how many water goblets or wine glasses.

Take the time today to put together a basic emergency supply kit. Keep it in a closed plastic storage tub someplace easily accessible (under a sink or on a closet shelf). A complete kit will cost about $100-$125 to assemble, depending on what you already have on hand.

Basic Emergency Supply Kit: 

• Water: 3 gallons per person, for drinking and washing
• Food:  3 day supply that doesn’t require heating or refrigeration (cold cereal & power bars for example)
• Portable Can Opener (if kit contains canned food)
• Self-Powered AM/FM/NOAA Weather Radio with Flashlight and Cell Phone Charger
• First Aid Kit

bandages, antibiotic wash, antibiotic ointment, burn cream and pain relievers at a minimum

 Emergency Whistle to signal for help

 Dust Mask Dust masks

Moist towelettes and hand sanitizer

Cell phone with car chargers

Lighter

Multi Purpose Fire Extinguisher

Copies of insurance policies, identification and bank account records in a big ziploc bag

Kids are not likely to wear dust masks willingly. There are cute child's masks that might encourage them to put one on. You could buy a box and split them with friends and neighbors. You might want to try some simple woodworking projects that require they wear a mask during a non stressful time. That way the sensation of covering their nose and mouth won't seem so alien in the event of an emergency.

There is also a secondary set of supplies you can assemble when you're preparing for a potential emergency (hurricane, tornado, etc.). Locate these things and place them near a door in case you need to evacuate when you have a storm warning in your area.

• Wrench or pliers to turn off utilities
• Prescription medications and glasses
• Cash and change
• Sleeping bag or warm blanket for each person.
• Complete change of clothing for each person
• Soap, toothbrushes, toothpaste
• Paper cups, plates and plastic utensils
• Paper towels
• Paper and pencil
• Books, games, puzzles or other low tech activities for children
• Infant formula and diapers
• Pet food and extra water for your pets

 My final nag: please, please keep emergency supplies in your car during the winter if you live in a cold climate. You need to avoid hypothermia or frostbite if you get in an accident or your car breaks down. These are the things my mother kept in her car all winter.

• Emergency mylar blankets - as kids we called these Space Blankets because they were developed for NASA
• Folding Shovel to dig your car out (added bonus for kids - great to make forts, trenches, etc.)
• a bag of kitty litter or sand - it will provide weight for additional traction; you can also pour it under your tires for traction
• Non-perishable snacks. Mom kept juice and granola bars in her car at all times.
• In the early days Mom kept emergency flares, later she switched to light sticks from the Dollar Store. You can use them for "flares" or to light your car interior so you don't run down the battery.
• Hand Warmers (my addition)

There is an old English proverb, "Hope for the best, but prepare for the worst." Mom's motto was "prepare for the worst, expect the worst, hope for the best." She definitely put the preparation before the hope. She was a product of her times. She grew up during a World War. She remembered the U.S. "dropping the bomb" on Japan. We've lived through terrorist attacks, nuclear plant melt downs and natural disasters. It's no wonder that one of my friends daydreams about building her own panic room - it's the fall out shelter of our generation.

 For more practical advice - and some funny reading from the 1960s, please go to:

 http://www.wikihow.com/Get-Your-Car-Out-of-the-Snow

http://wardomatic.blogspot.com/2006/11/fallout-shelter-handbook-1962.html

http://www.nebraskastudies.org/0900/frameset_reset.html?http://www.nebraskastudies.org/0900/stories/0901_0132.html

http://www.crimedoctor.com/panic_room_1.htm