These Family Stories were collected by the New Jersey Family Support Planning Councils
and the Family Support Coalition of NJ in order to provide a deeper understanding of the lives of families
caring at home for a family member with a developmental disability. 
Families were asked to share what a day is like in their lives.

 

Our family consists of two parents to M-- age 19 (special needs), and 16-year-old twins – R-- (a typical teenager), and S-- (special needs). M-- and S-- are non-verbal with many behavior issues.  S-- is extremely low functioning needs assistance with everything, doesn’t understand directions, and makes constant noise.

 My husband is in Chicago for business so I am a single parent this week. My day started at 2 a.m. as S-- wakes up making loud noises and can’t fall back to sleep.  I try to lay down with him to get him back to sleep but no luck. He is up for the day. I direct S-- to the bathroom and help him with toileting.  As S-- screams and fights me every step of the way, I dress him, brush his teeth, and shave him.

 It’s now 6 a.m. I start packing the lunches for M-- and S-- who are extremely picky eaters and won’t eat the school lunch.  M-- and R-- get up.  I direct M-- to use the bathroom. I prompt M-- to get dressed, help him brush his teeth, and shave him.  We all get into the car and we drive R-- to school. We get back and start the breakfast routine. I make at least two or three choices every morning in an effort to get them to eat breakfast. S-- needs to be feed.  I put shoes on both of them and they are finally ready for school when S-- has a BM accident.  It takes at least 10 minutes and one whole box of baby wipes to clean up the mess.

 It’s snowing lightly out and the bus it late again.  It’s 8:50 the bus arrives and the bus driver and aide start complaining about the noise S-- is making as he drops to the ground and fights me to get on the bus.  The bus driver reminds me that it’s snowing and to be home in case of an early dismissal.  The bus leaves, I clean-up the morning breakfast mess and throw the soiled laundry goes in the wash. I do at least five loads of wash a day because of toileting accidents.

 They are off to school for five hours.  I take a quick shower and run away. I go shopping today to get a break and to try to forget about my life.  On my way home I go to order another new pair of glasses for S-- because he broken them again. I pick up R-- from school and wait for the bus to arrive home with M-- and S--.  They get off the bus both making noise because the bus driver had the radio on loud and that upsets them.

 I direct them one at a time to go to the bathroom.  I hang up coats, empty backpacks with bags of soiled laundry from toileting accidents and start the wash. They have their snack and then watch DVD’s or play on the computer until dinner.  They are both on toileting schedules and need to be reminded to go to the bathroom.  S-- needs to be watched constantly. He gets into cabinets and the refrigerator.  S-- needs to be watched so he will keep his glasses on and not throw them into the garbage.

 We move on to dinner.  M-- needs a separate meal.  He is extremely sensitive to food textures.  S-- needs assistance with his fork and drinking glass.  In the middle of dinner, M-- has a BM accident.  I give him a shower.

 Around 8, I shower S—and M--, brush their teeth and give medications.  Around 9:30 put them in bed.  M-- doesn’t want to go to bed so tonight because his dad isn’t home.  He eventually goes to bed and falls asleep but S-- is still making noises and can’t fall asleep until midnight.  I fall asleep immediately after S-- does because I just never know what time my day will start again.

 

 
 

This is my list of activities for my daughter, B--, age 26.  She has autism.

 6:45 a.m. Wake B-- up.  Tell her to go to the bathroom, make sure she washes her hands thoroughly.  Put out the clothes she will need to wear (she will choose clothes that are not weather appropriate or do not match), put deodorant on B--.  Make sure her shoes are on the right feet and tied.

 Put out breakfast and meds.  After breakfast, give the rest of her supplements and vitamins.  Make sure they go down with the water.  Make B--'s lunch for job shop.

 After B-- goes to the toilet, I wash her hands and face, floss her teeth and brush them.  Brush her hair, put on lip gloss as her lips tend to chap easily.  Make sure she has an appropriate jacket if necessary and her lunch.  Wait with her for bus to arrive.

 4:00 p.m. B-- arrives home from job shop.  Tell her to go to the bathroom, help wash her hands.  Administer digestive enzymes and water, fix snack.  After snack we will sometimes bake bread for the next day.  (she is on a casein and gluten free and yeast free diet so we bake bread every few days for her lunches.  Sometimes we make banana muffins which she likes.)  Once a week we go to the health food store to pick up cookies, cereal and supplements.

 Once a week we see a chiropractor who helps keep B-- balanced and healthy.  He has innovative methods which address emotional issues and behavioral problems.  Once a month we see a woman who does acupressure because B-- has had no pain sensation in her hands and feet/arms and legs.  She has recovered some sensation and now can feel a pebble in her shoe or the pain of a TB test which she has to get yearly for job shop.  Once a week we go to therapeutic horseback riding lessons.  B-- cannot tell us when she is in pain or does not feel well so sometimes we have to figure it out.  We have to remind her to go to the bathroom because she is susceptible to urinary tract infections.

 Twice a month we drive B-- to a social event either at a local church or with her alumni group.

 5:30 p.m. Fix dinner.  Because of B--'s diet, we cook whole foods fresh and do very little take out.  Administer enzymes before dinner.  Make sure food is manageable; take bones out of meat or fish.

 8 p.m. Shower B-- and wash her hair.  B-- is unable to adjust the water temperature and can burn herself.  She also cannot tell when the shampoo is rinsed out of her hair and needs help drying herself and her hair. I shave B--'s underarms and legs, trim and file her fingernails and toenails as needed.

 Fix a snack. Administer enzymes.  Administer progesterone cream which B-- has been taking because of premenstrual seizures.  Clean B--'s retainer which she wears to bed.  Brush her teeth.  Make sure she gets in bed.

 Before we go to bed, we wake her and take her to the bathroom so she will not have an accident in the night.

 And that's our day!

A Day in the Life of a Child with Special Needs

 Our day actually starts the night before.  We pack my daughter’s homework, school paperwork, glasses (she has mild vision/hearing/dental issues), pads, behavior chart for school and bus, lunch, snacks, and even water (no water fountains) for school the next day.  We get her clothes out the night before.  We also wash her hair (no more tears shampoo/ cream rinse and we comb her hair with detangler) the night before because if she’s in the shower heat too long she passes out, so she just showers in the morning.  My daughter S-- has kidney disease and autism as well as other disabilities, but these are the main ones.

 We start the day literally having to get her out of bed.  We actually have a daily documentation sheet and another food tracking sheet.  She has special toileting hygiene that we have to follow per Children’s Hospital (special wipes, no fragrances/dyes so we have to bring them everywhere) and she’s on a two hour schedule; we have to supervise because even as she’s older, due to her combined type of autism (includes LD and ADHD), she loses focus.  On a good day, she hasn’t wet the bed.  We have to supervise her shower and there’s a grab bar and shower chair to assist.  We have to help her dress as she can’t do buttons, snaps, or zippers or tie shoes.  We wash her face, help her with teeth and retainers (besides braces she’s had multiple oral surgeries), deodorant, sunscreen on her face  due to dermatological surgery and photosensitivity from meds., chapstick (due to dehydration), etc. We give her something to eat and her a.m. meds before school.  Then help her with a coat if it’s cold out.  We walk her to the bus and help her up the stairs.

 We have a complex IHP (Individual Health Plan) the school follows besides her IEP.  I work while she’s in school.  I have flexible hours so can make up work if she’s home sick which could be 2-3 weeks; one year she was out 11 times.  I also have a cell phone which only the school nurse (not even my family/friends) has the number.  S-- has door to door transportation and a bus aide.  I meet the bus and help her down the stairs.  After school, she washes hands (which we do after any outing/before meals/before and after toileting as she’s medically fragile) and goes potty.  She’ll have a snack then homework (some days we have a tutor due to 4-5 hr. daily tantrums over homework).  Her snacks and meals are a renal diet -- the most medically restrictive.  We have to make sure she gets vitamins, iron, cranberry juice, and yogurt daily as she is on prophylactic antibiotics for life.  We have to watch sugar, vitamin D, vitamin C, phosphorous, calcium.  Just to keep things interesting she has a food allergy to barley.  We have to write down the sodium and protein of everything she eats, total it daily, and give the list to the nutritionist at the hospital. 

 As her kidney function has decreased she has developed hyperparathyroidism, hypertension, hypercholesterolemia, anemia and bone disease.  We have to make sure she gets flax and omega 3.  She can’t even have tap water as it has fluoride.  She now has to take phosphorous binders with each meal.  We also have to add a caloric supplement to her meals because she’s just barely on the weight charts.

 Other days after school, she has participated in Very Special Arts, special needs dance, transition, self advocacy, and other therapeutic activities.   Some evenings she has social skills, therapy dogs, and Council for Exceptional Children activities.  Weekends she has Special Olympics, Club Chameleon (autism), NAMI (Nat’l Alliance on Mental Illness) Kids, music therapy, and youth group.  Seasonally she participates in Miracle League, Challenger Little League, and special camp.  We have to supervise all activities and bring her food/water/handwipes and be prepared for pottying.  Her restrictions include heat, sun, swimming, no contact sports, and no risk of falls from heights. 

 After her activity, she again washes hands.  She has dinner, more meds, and sometimes an evening activity.  Then we do her evening shower, help her dress, brush teeth, and put her to bed after we do daily range of motion activities for contractures in her leg muscles due to spina bifida occulta, and stretching due to scoliosis.  After behavior intervention she now sleeps better which means it only takes her 2 hours to fall asleep with the house dark and quiet (fan, vaporizer, nightlight, and air purifier), she’s usually only up once at night, and we’re all up at 6 (she used to be up til 1:30a.m.)  Sometimes she decides in the middle of the night she wants to sleep in the pullout couch so we have to move all her stuff. 

 During most of the assistance we give her S-- resists us both due to being a teenager and being autistic.  Daily I deal with checklists from school on the toileting/meds/diet and behavior.  We have a behavior checklist for the bus too.  I get multiple insurance claims each week, some of which have taken a year and a half to appeal each.  Right now I’m applying for Medicare for kidney disease, and soon for SSI/Medicaid and guardianship.  Besides paperwork, there are many calls to insurance, special child case manager, schools, hospital, DDD, activities, doctors, etc.  We are now going to Children’s Hospital monthly or biweekly depending upon her blood work (we now have to use topical anesthetic for that) as she needs a transplant (I’ll probably be the donor) so we anticipate things will get even more complex in the near future. 

 
 

Here is an example of our day to day with our seven-year-old daughter B--.  Please keep in mind that our daughter does not have Spina Bifida, she is a quadriplegic second to transverse myelitis.  SBA supports us as we receive the same types of care and medical attention but TM (transverse myelitis) is so rare that we do not have a resource available for our specific condition.

 B-- wakes up at seven am, as she is a quadriplegic, I get her dressed every day, this includes removing her catheter and changing her overnight diaper.  Hoping that she did not "pee-out" overnight as that requires another level of clean up and washing that is not normally calculated in the morning ritual. Nonetheless, I get her dressed and give her her medicine which she must have 30 minutes before she eats or she may throw up due to her reflux issues.  In the event that her medicine does not take hold and she throws up at school, she will have to be picked up as this is school policy despite the fact that it is an underlying digestive issue from her TM and not likely to be a stomach virus.

 Once she is at the table along with her other three siblings, two of whom are still under four and also require assistance to dress and get to the table, breakfast begins.  The least of Bridget's favorite meals, we are constantly reminding her to eat, she is afraid to eat too fast for fear of throwing up so it is a continual struggle to eat first thing every day.  In the event that she finishes before her bus, we get her supplies to brush her teeth, make and pack her lunch, pack her book bag, put on her coat and pack her computer, put on her jacket and strap her into her chair for transport.  I then get dressed for work and try to get there on time.

 Once at school, she goes to her class along with her aide and unpacks her things and gets ready for class.  Throughout the day she leaves the classroom for therapy and to be catheterized twice daily at the nurse's office.  She also utilizes a stander for gym and at some time in the classroom to improve her strength and give her some relativity to her standing and running peers.  She eats lunch with her modified lunch containers and utensils but tries to get her own lunch when she can, typically with the aide’s assistance.  Due to a history of choking which had resulted in a loss of the ability to breathe, she needs an adult present to eat her lunch.

After the day continues and she returns home on the bus, she is again catheterized and then taken out of her chair for stretches to counter her sitting for the majority of the day.  She then completes her homework with assistance, as in second grade there is a tedious amount of cutting and gluing, which she can not do independently.

She also must practice her typing for her therapy homework as her physical disability limits her hand function and she cannot keep up with her peers and their writing.

 Once her homework is complete she then needs to finish her dinner as she has therapy four times a week and she also participates in the math and science club at school once a week.

 Upon completion of her therapy session she must adjourn to the bathroom for her nightly bowel program.  She is placed on her commode (adaptive toileting seat) where she reads until toileting is complete then she brushes her teeth. She is catheterized for the night, changed and then carried to bed.

 That is a good day, when no additional doctor appointments or medical consultations are needed.  No issues arise at school, causing meetings or attorney intervention, again taking off from work. She is healthy and otherwise uneventful, if not those circumstances can make day to day extremely overwhelming.  If she gets sick, she has historically been on breathing treatments with the use of a coughalator four times a day and as such she is kept home from school due to the level of intervention needed to get her coughing.  As long s there is no UTI present where the medicines seems worse than the infection (but necessary) because it makes her nauseous and causes vomiting and then she won't eat or drink so we balance the issue of hydration and infection. 

 We have specialists at CHOP in Philadelphia and those visits require I take a day off from work, whether to stay home with my young children as these appointments turn into all day events or to take her to the appointments.  Or else we are traveling to Baltimore for two weeks of intensive therapy at Kennedy Kreiger again; then either I take off for my other children, or family comes to stay with us to help out, or I take off to travel with her.

 Unfortunately we adjust because we have to but by no means is this easy, not on a good day and certainly not on her worst day. 

 

6:30 am  My 9.5 year old son wakes up and comes into our bed.  Hugs and kisses and pulls on my hair, repeating over and over, beautiful hair, what color?, what day is today?  no school today?  

 Eats breakfast and takes his medication in his 'morning cup.'  He then goes to play on his own while I take a shower.  

 As I step out of the shower, he comes into the bathroom; without his pants; he's had a toileting accident (BM).  I finish undressing him, wipe his behind as best as I can, and have him take a bath/shower.  While he is soaking in the tub, he vomits.  I drain the tub, scoop out stomach contents, shower and wash him thoroughly.

 Dry him off, brush his teeth and take him to his room and put his clothes on.  Bring soiled laundry to basement and put in washing machine; dispose of BM in toilet; clean walls off where smears occurred.

 Get myself dressed.  Assist my 2.5 year old with breakfast, dressing and take her to daycare.

 9:30 am            Drive my daughter to daycare and return home.

 10:15 am           Travel with my husband and son from Cranford to Ramsey for neurologist appointment for answers to latest problem; sudden onset of major behavior issues.      

11:00 am           Latest blood test results are negative; do not give any clues as to why this is happening. He has been in and out of school since December 9, 2009.  Drive home, drop off my husband, drive to my mother's house so she can stay with my son so I can get to work.

 1:30 pm            Arrive at work; struggle to keep my head above water as I have been in and out for the last 2 months.

 4:00 pm            Husband picks son up at my mother's house and keeps him busy; errands, sleigh riding, etc.

 5:30 pm            Pick up daughter from daycare and return home for dinner.

 6:00 pm            Dinner:  mostly eats with his hands, requests several cups of milk, not much time to sit for my husband or I; wash/wipe his hands.

 6:30 pm            Clean dishes, prepare am and pm medications for son, fold laundry, attempt to play with children.

 7:15 pm            Assist son with bathing, drying off, brushing teeth, dressing.  Clip his finger and toenails while he struggles to pull hands and feet away.    

 8:00 pm            Assist 2.5 year old with bathing, drying off, brushing teeth, dressing.

 8:15 pm            Lay with son and tell repetitive stories while he winds down to sleep.

 9:00 pm           Play with 2.5 year old daughter and lay with her while she falls asleep.  I fall asleep.

 They both sleep through this night!!  It is a treat when they both sleep through the night!!

 Next day

Receive news that his out of district placement was accepted and will occur sometime this week!! 

Perhaps we can return to a more normal schedule when he returns to school.......whatever normal is.......

 
 

6:30 am...         Get myself up, coffee, shower, dressed, bed made. 

Get her up. Guide her to the bathroom. Make sure she goes.  If she has her 'period'...check the sheets/blankets for blood stains as hands go down there.

If needed pull off sheet/blanket to be washed.

Bathe...make sure (bloody) nails are clean...wash hair if needed.

If no period...oversee face/hand washing. Help her dry or verbal cues to do herself which takes more time. Throw towel with dirty sheets.

Help her dress -- deodorant on or verbal cues to do herself.

Make sure between toes are dry...fungus...from moisture between toes.

Oversee tooth brushing...timer. Her turn then mine. Pay special attention to back sides of molars as this is area prone to cavities. Verbal cues, rinse, spit.

Verbal cues...tidying bathroom...clean hand towel up...dirty stuff in laundry pile.Blow dry hair if needed / fix hair.

Suntan on skin especially moles on face. Lotion on dry itchy skin if needed. Trim nails -- hands and toes.

Remind her to make her bed (however).

7:30                  Make breakfast...balanced. Taking into account what she feels like having.

Prepare her lunch...while encouraging her to be part of the prep work...verbal cues. All this takes time and must be done calmly or she starts to cry...snot and drool then running all over her clothes.

Re-brush her teeth (in kitchen) as she store food in the back/sides...again...cavities

Vitamins...check what needed for that particular day

Have her help to pack it all up...get her coat ...again encouraging her to do all she can herself.

8:15                  Out the door, in the car and drive her to the 'meeting' spot of the van that takes her to her day program

8:30                  Van picks her up.

 My day is then spent...

Exercise to stay in shape to take care of her. Walk the dog.

Straighten up house...laundry in/out, in/out, in/out.

Shop for necessary items...food, clothes, meds, household items.

Take care of any appointments I may have.

Talk to, email, fill out, set up, follow thru, make & coordinate appointments or activities etc ...that relate t

her in any way shape or form.

Relax and breathe! Eat lunch.

2:15                  Drive to pick her up at spot.

2:30                  Pick up.           

3;00                  Immediately remind her upon entering house to use the bathroom. Sometimes she has an accident at this time because she holds it too long or misses the bowl.  Change clothes. More wash.                                                             

5:30                  This is the time I use to take her to any appointments she has, any shopping she has to do, any activities she has to go to.

6:00                  Get dinner ready...always thinking 'balanced diet'...Encourage her participation in helping...setting table  etc. Patiently guide her, instruct her , encourage her.

Eat, clean up...include her.

7:30                  Bath...hair...teeth routine.

Spend 'relaxing' time together...watch tv, puzzles, book.

9:00                  Toilet reminder...always making sure she washes her hands well. This is the case every time she uses the toilet as there are times she has feces on her fingers from wiping and/or scratching.

Also...very important to keep tuned into bowel movements as she can get constipated and cause more problems...a daily vigil.

I also include her in activities with my friends...shopping, lunch whatever social activity I am doing if she is home because of holidays, snow days etc.

 Any evening out with my husband requires an 'adult sitter' and the money to pay the person.

 Weekends are basically the same.

Instead of her day program I drive her to/from her Saturday day camp. 

Any evening social activities...dance...social...again require me to drive to/from the activity or hire somebody to do the driving.

Sunday we 'wing it'...family time. Any invitations my husband and I have must include her or hire an 'adult sitter'.

Son, 35 years old, Autism, intellectual disability, seizure disorder.

Part time job, part time workshop, one day in a "community" program.

 Hardest task:  organizing the pieces, remembering where he is from moment to moment, making sure he is where he is supposed to be, basically being his case manager.

No one person is "in charge" of his entire day.  Since it is pieced together I am the point person most of the day. Result: deal with job coach, day program supervisor, recreation staff, respite workers (arrange respite for ANY time I cannot take him with me)

 Wake him up, supervise lunch making, help him dress in appropriate clothing for day's activities, supervise his wait for transportation.   Help him understand changes in season in terms of what he wears out of the house.  Be the "on call" person, reachable at all moments in case of problems.

 Cook his dinner, supervise his shower.

Transport him to recreation program, pick him up from recreation program (as late as 11pm or midnight on weekends). 

Do his banking, answer Social security forms, arrange all doctor visits, take him to doctor visits, arrange dental visits, take him to dental visits, be sure to be at home when he arrives after program.

Answer endless questions (in sign language) over and over.  Deal with behaviors resulting from any changes in regular schedule. 

Deal with issues of public bathrooms which he must go into alone because he is my son, not my daughter.

Make sure he has appropriate money for the day's activities.

Shave him at least every other day since he does a poor job shaving.

Supervise him when he "does" his laundry. He does a very, poor job on his own.

Make sure he NEVER is on his own on the street, in traffic, etc. He has never learned to "look both ways"

 He is ALWAYS on my mind, I am always nervous when he is more than ten minutes late.

 
 

3 PM

  • My 8.8 year old returns home on the school bus babbling on about hats (???).
  • He lines up all of Mr. Potato head’s shoes...

4 PM

  • I try to engage B-- in Lego -- however he’s not interested -- preferring to spit on the glass door pane and talk obsessively about hats (I think it’s hats..??)

5PM

  • Behaviorist arrives with new and exciting toys.
  • B-- earns tokens and gets to pick a Playmobil. He drops a small piece inadvertently knocking over the perfectly aligned knights and has a tantrum lasting several minutes!
  • Behaviorist wants to know if I have been taking data and videos of such events in the hopes of scripting these and other life scenarios. I tell her we have some interesting footage that my teenage daughter is keen to post on YouTube.

7PM

  • Behaviorist gets ready to leave taking “cool toys” with her. I ply toys from clutching hands, only to provoke another tantrum with spitting. The behaviorist suggests shaping spitting into a positive behavior, i.e. water station, bubbles, spray guns, etc. (which is a great idea if only it wasn’t the middle of winter).
  • I take B-- upstairs to the “water station” aka the bathroom and leave him to spit on the bathroom mirror while I make dinner.
  • I spoon feed him Spaghetti-o’s while we watch his handiwork dribble down the mirror.
  • Give bath.

8PM

  • Dad’s home.
  • B--’s ADHD medication has worn off hours ago and it now seems as if all that bottled up energy is letting loose.
  • I brace myself for a long night.

A typical work-day morning

 Awaken at 5:00 AM – shower, wash hair, get partially ready for work.

 6:15 wake up daughter (33 year old with Down-Syndrome).

 Help her into bathroom – clean her up after using toilet – wash face & hands.

 Assist her to sink and wash her hair – can no longer get in & out of tub, and shower is downstairs – only used on weekends when there’s time to help her scoot up & down stairs.

 Help her to put on bra, underwear, clothes, socks & shoes.

 Bring hairdryer to her bedroom and brush and partially dry her hair.

 Assist R-- to kitchen/dining room.

 Prepare breakfast for R-- and watch that she chews and prompt her to eat slow.

 Give medications to her and make sure she takes it.

 Prepare her lunch for day program and a snack for after-day program.

 Walk her back to bathroom and brush and floss her teeth.

 Return to bedroom and finish drying and fixing her hair.

 Assist her back to living room, put on her jacket where she waits for a few minutes.

 Finish getting myself ready for work.

 Get wheelchair from garage and place out front.

 7:30 bus arrives – help her down front steps to wheel-chair and bring to bus.

 Go back in and leave for work.

 
 
  • 6:30 am - Go in to wake up my 18 year old daughter.
  • Sit with her and coax her out of bed.
  • Give her medicine (put pills in her mouth and hold cup of juice so she doesn't nod off and drop the cup on the floor, which is a problem that is related to her seizure disorder).
  • When she’s sitting at the kitchen table, I suddenly realize she’s gotten her period (which she doesn’t know to tell me about) and has made a mess.
  • Put her in the shower and wash her.
  • As she steps out of the shower she gets a bloody nose.
  • Sit her on the toilet with a towel around her for warmth, and hold a tissue to her nose until the bleeding stops, which is something she hates and struggles against.
  • Put deodorant on and comb her hair.
  • Take her to her room and put her clothes on.
  • Bring soiled laundry to basement to put in washing machine.
  • Brush her teeth.
  • Help her put her jacket on so that she's ready for the bus.
  • Get myself dressed for work.
  • Check her backpack to make sure she hasn't crammed it full of things she's not supposed to bring to school, then see her out the door and onto the bus.
  • Go to basement to put laundry in dryer and realize the sink is backed up. 
  • Ask my husband to please deal with the sink so I can leave for work!

The Statistics of Care that Support L--’s Life

 L-- is a 24-year-old young woman with severe, multiple disabilities who lives at home with her family.  L-- is dependent on others to assist her with every activity and need in her life.  She has a rare disorder as well as intractable seizures, scoliosis, kyphosis, osteoporosis, and visual impairments.  The following statistics tell the story of the amount of care it takes to support L--.

 The Months

 Seizures per month – 4

 Loads of laundry per month – 19

 Showers per month – 16

 Range of motion exercises routines per month – 20

 Clothes changes per month – 96

 Teeth brushing per month – 62

 Nights of interrupted sleep per month – 16

The Weeks

 Transfers per week – 175

 Meals prepared and fed per week – 35

 Pills taken per week – 63

 Toileting/diaper changes per week – 49

 Bandana changes per week – 53

 Hair washing/combing per week – 16

 Orthotics on/off per week – 21

 The Days

 Total care provided for all aspect of L--’s existence – 8,920 days of her life

 Fear and worry about health, care, and the future – 8,920 days of her life

 Loved and treasured – 8,920 days of her life

 
 

(Mother) Alarm rings. I get myself dressed, go downstairs and pack my daughter’s lunchbox and put it in her backpack. Back upstairs to wake up our 21 year old who is on the cognitive level of a one year old, still in diapers, doesn’t walk or talk or capable of any independent life skills.

 First I need to remove the pillow from her face which she has placed there while sleeping (even thought we have removed it a number of times during the night. I am always fearful that she will cause harm to herself while sleeping which makes for a very restless sleep for me every night). I remove her hands from her diaper and check if they are stained with feces or menstrual blood or just urine soaked. I lift her out of bed (how will I mange this in 5 years’ time as I age I think to myself!). We go to the bathroom to wash her hands a few times to get the odor off – might need to use industrial soap!

 While I am washing my daughter’s hands she is gagging and bringing up mucus that has dripped down her throat and into her stomach while sleeping (she is incapable of  blowing her nose) Once she has finished vomiting we wash up again and I will have to clean the bathroom after I put her on the bus to school. I have to remember to also check her sheets to make sure she didn’t wet the bed. If so I will have to strip the bed and wash her sheets and comforter and pajamas.  I take her back to her room to get dressed (put on deodorant, cream on body for dry skin and powder on bottom), brush her hair, put on her Ankle Foot Orthotics and go downstairs. I lift her into her wheelchair, hope my back will last a lot more years of this heavy lifting.  

 I sing and dance to get her to quickly eat a pudding and have a sip of milk before the bus comes. Sometimes she just isn’t ready to process the food and I have to send a note to school to ask the teacher to give her a drink upon arrival so she doesn’t dehydrate. I put on her coat and hat, strap her into her wheelchair and wheel her outside to the bus. A kiss goodbye and now the clock really starts to tick. I have to pack in as much work and errands as I can in the hours she is at her program because it is impossible to get anything done when she is home. Most places are not really handicapped accessible and she panics at most places we go and vomits! What fun! Who wouldn’t want to go into a bank or library and catch vomit in their hands?! We won’t even talk about all those doctor visits (or all the places she thinks are doctor’s offices) where she can’t stop shaking or gagging uncontrollably…

 (Father) While most people come home after a hard day’s work to relax, my typical day is quite the opposite.  I have a daughter who is currently 21 years old with physical and cognitive delays. She is on a 1 year old level and still in diapers.

 On a typical day, I get home from work to find my wife totally stressed out because she already tried to feed 3 different meals on average to my daughter who refuses to eat anything except for pudding.  If or when we finally do get something substantial in her, there is about a 1 in 3 chance that she will throw up everything we tried to feed her for the past hour.  When it is time for me to eat my meal, she would crawl up to the table and try and throw everything from the table on to the floor.  Next she would stick her urine smelling hands in my face as I am attempting to eat.  (She sticks her hands in her diapers so often that even industrial hand cleaner can’t get the stench out).  While I even try to attempt to unwind in front of the television in the living room, she would throw all the cushions off the sofa. She would then proceed to wander into the kitchen where she will pull to a stand and open up the cabinets where she will stick anything she gets a hold of in her mouth which could include anything from potato chip bags to can openers.  I would have to get up at least 10 times within a half hour period to keep her from hurting herself. 

 The stress continues with bed time which takes over an hour.  I have to stay in her room until she falls asleep to make sure she is not sucking on her pajama top or sheets, or smothering herself with a pillow or covering her head with the comforter.  I take blood pressure medication at night before bed only to start another stressful day when I wake up the next morning.

 (from father in email)… If my daughter doesn’t have a day program when she is finished in June, life is going to be even more difficult and I didn’t think that was possible.

Single Mom of H-- (11 years old)

 Mon-Fri, my day generally goes like this:

 5:30 AM I get up, shower, dress, have my coffee, and pour my son's meds

6:00 AM prepare his neb treatment, and give it to him while he's sleeping.  Administer meds via g-tube

6:15 AM wake him up, take him to the potty.  Once potty is done, wash his face, brush his teeth, lotion him head to toe (he has bad excema), dress him and do nose spray.

6:40AM downstairs to feed him a small breakfast; pack lunch for school

7:10 AM put him on the school bus.

Anywhere from 7:45-8:15 AM, I leave for work, generally until 4:30PM

Anywhere from 4:45-5:15 PM pick him up from after-school

Evening -- dinner, homework,play

9:30 pour bedtime meds

9:45 wash him up, lotion again, get him in pj's and meds via g-tube

10-11PM finish paperwork/computer work for job

 In addition, my son had 2 hospitalizations in the past 7 weeks, both due to VP shunt malfunction.  Admissions resulted in 2-3day stays at CHOP's ICU for neurosurgery, to correct the malfunctions. 

 Once home, relying on grandparents to assist with care, in order for me to return to work.  2 follow-up visits to Philadelphia to see the neurosurgeon required, 1 month after each hospitalization. 

 Additional specialists seen during the year:  Orthopedics, 1x/yr; Gastroenterology 2x/yr; Neurology 1x/yr; Allergy 2x/yr.

 
 

6:30am get up so I can start getting M-- ready before the nurse comes in

Take down tube feeding

Give 6-8 medications via tube feeding

Change diaper on my 12 year old

Trach suction

Albuterol nebulizer treatment

Saline nebulizer treatment

Chest PT

Trach suctioning

Coffalator treatment

More trach suctioning

 7 am – nurse comes in – update nurse on M--’s medical status and any items that need to be taken care of that day

Make tube feeding lunch, Pack schoolbag, sign all school forms and make sure homework is in folder

 I squeeze in a shower before bus comes between 7:40 and 7:50. So I can say goodbye and make sure nurse doesn’t have any questions.

 8:30 am Get myself out the door to work

 AT work:

Call to schedule orthopedic followup appt at CHOP

Call one pharmacy to order a specialty prescription

Call second pharmacy to make sure other prescriptions are ready to be picked up after work

Have medical bill we are being incorrectly billed – called insurance company, then provider to straighten out

Call nursing agency to request additional nursing hours to cover my surgery scheduled for this Friday. Find out that nursing schedule changed for when the CHOP appt was scheduled. Called CHOP back to re-schedule appt I just made.

 AFTER work:

Stop at second pharmacy to pick up 8 prescriptions and 6 cases of Pediasure. Lug Pediasure cases to car, dropping bags along the way, then carry cases in to bathroom closet in house.

Sort out medications so nurse can draw up meds for that night

Have nurse help me change out M--’s bed linens since I can’t reach around all the medical equipment by myself.

Have nurse transfer M-- to bath chair so I can give her a bath

After bath, nurse will dry off M-- and transfer to living room

Blow dry M--’s Hair

Get report from nurse concerning M--’s day and medical issues, or school issues that need to be dealt with

 Dinner

 Write out M--’s homework sheet on what she did that day after school

 At Bed

Transfer M-- to bedroom

Shut down living room equipment; make sure everything plugged in for charging

Diaper change

Put in pajamas

Trach suction

Shot of Qvar via MDI

Administer 6-8 medications via g-tube

Mix 3 cans of pediasure with oatmeal and Fibersure; put in tube feeding bag

Hang tube feeding

Carefully position M-- to avoid any skin breakdown or rubbing from the ventilator tubing

Set limits on pulse oximeter; take pulse ox into living room for continuous monitoring

Adjust PEEP limits on ventilator

Make sure O2 is set correctly

Put on radio, lower lights, kiss goodnight

 DURING Evening

Check on ventilator

Get up 3-4 times, when tube feeding alarms to adjust

Get up to suction

Get up and move pulse ox probe from toe to finger when it stops reading – manage to wake M-- up, have to reposition and wait another 30 min for her to fall back asleep before I can go to sleep

 That’s just a spattering of the typical caregiving activities. That doesn’t even count this Saturday when M--’s trach plugged while being suctioned and she couldn’t breathe and turned blue and we had to do an emergency trach change!

I have a 34 year old son with Downs Syndrome. He has many medical issues, plus behavioral issues too. Our days can be very stressful in general. He is receiving services through Real Life Choices, and has Day Services only. We have 2 support people at this time. This service did help us to acquire a membership for the YMCA, which he does enjoy. However, the hours and budget that he has are just not enough to make his life well rounded. 

 My son sleeps late so his day never begins well. He also has sleep apnea and diabetes.

Here is our usual day of events:

1) wakes up at 11-11:30am

2) usually not out of bed until 12 noon

3) eats his luch and takes his meds

4) plays his video games

 5) usually becomes irritable by 4pm every single day

 6) requires one-on-one counseling to redirect him from making a bad choice

7) stops for dinner at 5pm 

8) finishes dinner by 6pm-eats very slowly 

 9) takes his shower

10) plays some more video games 

11) bedtime is usually a struggle--it is 10pm and may often take until 11pm to get him to bed. 

 During the day, his blood levels must be checked and his meds are given at 11am, 2pm, 6pm and bedtime too. On days when he does go out with a support person, there is always the risk of him having a problem, & the person calling me for assistance. I never get to relax, and also have no other family to support myself or my son. So I literally get no breaks from him. He is my 24/7 job at this point in life. His Father passed away 6 years ago, and things have been rough for us. I also work a full time job, which does afford me the ability to work from home at times. During my son's lifetime, he has gotten very few services from DDD. As he has aged, he has developed many issues in general that necessitate doctor appointments constantly, also lab work too.  He also has anger management issues, and I am constantly on guard waiting and watching for signs of another episode.  He does have an older brother, who does not bother with him, so it is basically us and my Fiancee, who are his support people.

 
 

I’m in awe of parents with a child that’s non-verbal, or in a wheelchair .I can’t begin to imagine the trails they have to endure. After all, my daughter can walk. She is very unsteady, she does sometimes walk into walls (her vision) and she can’t navigate stairs without assistance. She has a prominent limp and a very wide gate, but still; she can walk.  She also can talk, although I can’t  understand a lot of what she’s saying . And it’s these times, when I don’t get what she’s trying to say; that I usually GET IT.  She becomes agitated,   frustrated, anxious, and self-injurious. This is when we get it. The behaviors; the meltdown. But still, I’m lucky.

She’s eight years old, but cognitively; she’s three. She has been diagnosed with CP (Cerebral Palsy), intellectual disability, and autistic tendencies… for now.

A few weeks ago I started to notice her having these tremors or spasms in the middle of the night. It looks as if she’s being electrically shocked, in precise intervals ;( shock lasting 4 seconds; then wait; seven seconds). Repeat. I need to call the neurologist.

I get a call from her school…again.  This time they say that they think she’s having something called Absence seizures.

Okay, I leave work. So what else is new?  I call the Neurologist on my way to the school.  I can get an appointment three days later, that’s great.   During the appointment with the Neurologist, he asks me about the hair under her arm pits. I tell him that it’s been there since she was five and she’s now developed hair fully in other private areas. He refers me to a NEW specialist. An Endocrinologist. Great, one more specialist. Now let’s see, how many it is now: Pediatrician, Developmental Pediatrician, Ophthalmologist, Orthopedic Pediatrician, Neurologist, Speech therapist, Occupational therapist, Psychologist.

I get an appointment with the new doctor, there’s an opening in two weeks, good; Ill take it.  But first, I have to schedule an MRI. Another day of missed work. (2nd MRI this year) and something called an EEG, with a 24 hour halter monitor. Two more days off work.   We go to get the EEG monitor. They have to glue electrodes on her head. She has a melt down. A big one this time – it takes four people and myself to hold her down. She scratches the Tech so badly that she has to get a tetanus shot. She has to wear this monitor and carry this 3 pound pouch for a day. Of course she can’t go to school.  We’ll have to return the monitor the following day (what are we up to so far? 5 days off work in one month); No work that day.

So I look up Endocrinologist to see what they do. (I’m getting good at this stuff; I should have gone to med school.) At our appointment as the doctor examines her she notices dark fur –like markings around her neck, back, and in the creases of her limbs.  Before we go any further, she needs to be tested for Diabetes.  The doctor writes a THREE PAGE script for blood work, and one for an x-ray, (Something called a Bone age density). My first thoughts are, maybe I can get  it can get  both done one the same day (8 days ).

Results:  predisposed type II diabetes. Good, she doesn’t actually have diabetes. I have to watch her diet. She’s overweight. I know that. She complains of being hungry exactly two hours after each meal. She also gorges her food when she eats. Someone (one of her doctors) told me that this is sometimes common in children with her particular mental disability.

But, back to why we’d gone to see the Endocrinologist in the first place. My daughter has what is called precocious puberty. What this means is that she’s moving through puberty really fast. (Did you know that they can tell your bodies developmental age by an x-ray of your hand?)

Fascinating. I really should have thought about med school.

And so, she is: Chronologically 8years old, mentally 3years old, and developmentally 12 years old. And the MRI results: seizures. Add seizure disorder to her diagnosis. And precocious puberty. And predisposition of type II diabetes. What a month.

I think I’m having a flare up myself. I was diagnosed with Crohn's Disease about five, six years back. I can’t remember. I just get a colonoscopy every few years and if I don’t hear the C word, I just keep going. I can’t afford a day to schedule appt (maybe I can just call my doctor, and he can advise me over the phone) we’ll see.

Another call from my daughter’s school.

This time they say that she’s just not acting like herself. Just not herself?? What exactly does that mean??

As I left work and drove towards her school I’m thinking, which doctor do I call? Who should she see THIS time? I call my mom. My family is exhausted just hearing about it, yet all they can do is listen.

I teach dancing school twice a week for an hour, my respite. Yet no one understands why I would want to add one more thing to the list of thing I do. But the money also pays for her dance class and I’m trying to give her a normal life. The school and some family members think that she does too much (dancing school on Monday, Cheering on Fridays); that I need to spend more time with her. They say that she always asks for mommy. She asks for mommy when I’m with her! She gets “caught in this mental loop” and repeats the same thing over and over. For hours, for days. I think this is the “Autistic tendency”

Her school feels that the afterschool program is too much for her, her day is too long. They ask “Can’t I just let her go twice a week?” They   don’t understand, she loves it there, she cries when she can’t go. It cost ½ my monthly salary but I can’t take that away from her, and besides; I have to work.

I’ve got to go. My daughter’s school is calling. I’m staring at the number for a real long time. I really wish that I’d gone to med school.

“A DAY IN THE LIFE OF S-- AND HER FAMILY”

5:30 am            Dad gets me up and gets me dressed and takes me into the bathroom where I   sometimes have a seizure while sitting on the toilet. This happens at least one to three or more times a week. If I have cluster seizures he calls my mom and she comes to give me rectal Diastat to stop the seizure and break the cycle of seizures for the time being. Dad then takes me into the living room and puts on my favorite DVD or the TV until Mom finishes getting ready for work and comes out to help me.

 6:15-7 am          Mom makes my lunch and gets my daily medications ready to give me along with getting my breakfast ready for my respite worker to come.

 7-8:30 am          My respite worker, Marilyn arrives and mom goes off to work at 7:00.  Marilyn gives me my breakfast and takes me to the bathroom and waits for the bus to arrive to take me to my program.  She gets me in my wheelchair and takes me down the lift to wait for the bus in the garage.

 9-3 pm              I’m at my day program until the bus arrives to bring me home.

 3-5 pm              My afternoon respite worker meets my bus at home and stays with me until mom gets home from work. She takes me to the bathroom and gives me a snack.

 5-8 pm              We have dinner, and then it’s time for a shower which mom and dad have to help me with. I can stand but I don’t have any balance so they have to be sure I don’t fall in the tub and hurt myself. Also, with uncontrolled seizures I am at high risk so I can’t be left alone in a standing position. I’ve fallen way too many times and have had stitches in my head because of my glasses cutting my face.  I don’t want that to happen again if possible.  Mom gives me my night medications before I go to bed and brushes my teeth.

 8-830 pm          Mom or Dad put me in bed and give me books to look at along with music on the radio until it’s time for lights out.

 8:30 pm            My parents finally have time to sit down and relax until bedtime at 9-9:30pm to prepare for another day beginning at 5:30am.

                        Did I mention I was 26 years old, am non-verbal and non-ambulatory so I need a lot of help with everyday living activities?

 
 

I am a professional, working 10 hr. days in New York City, (plus 3 ½ hrs of travel time).  About a year ago my husband was also a successful professional, working on Wall Street, making big plans for our future and caring for our two children, J-- (21) who is currently attending college and V-- (26) who has Down Syndrome and lives at home.

Currently, I am caring for my 89 year old mother who is legally blind, has multiple health problems and open wounds which require daily care.  This means that after a long day at work I need to come home, change her bandages and massage her legs for up to 30 – 40 min. to prevent additional wounds.

Last year, my diabetes inflicted husband became legally blind; he cannot work and is not able to take care of financial duties and many of the chores he used to do at home, such as driving my daughter to various programs and activities, go to the store, mow the lawn, etc.   I now have to make time to pay bills, balance accounts, take my daughter to bowling, exercise, shopping, etc.

As if life was not difficult enough, the recent budget cuts has thrown a wrench into my daughter’s services.

When V-- graduated from High School I was able to enroll her in the “Self Directed Day Services” a program from the Division of Developmental Disabilities in which a budget is assigned to the individual depending on his/her level of disability. With this budget one can purchase the services that most identify your family member’s needs such as day programs, a support worker to facilitate volunteering in various organizations or to take them to various activities. It is entirely managed by the family member or advocate; this means I have to spend countless hours of paperwork, time sheets, supervision, hiring and firing personnel, etc.

The program has worked out well for V-- BUT… since her father became disabled and is now collecting disability benefits; V-- is now receiving additional money from SSI which makes her Medicaid ineligible; this puts her funding at risk and she could end up losing the services she cherishes and provides her a daily activity. She will become a “couch potato” without any outside source of activities during the workweek. 

Who would have imagined that my daughter was to get punished because of her father’s disability!!!!! 

In addition, V-- attends the East Brunswick Adult Life Skills program at night. This program has helped her attain some writing skills, sight word reading, cooking, shopping etc. HOWEVER, - we have just been informed that due to recent DDD cuts, this program is coming to an end after 31 years of service!

In a few weeks my daughter might not have any services at all!  Because she is a very social person, she will become withdrawn, depressed and might develop many behavioral problems that will probably cost more to manage than what she was originally getting.

During any “spare time” that I can find, I help other families navigate the intricate road of finding services for their loved ones.  This has helped me realize that my situation is minimal compared to other families of children with much more severe disabilities.

Is anyone listening?

Does anyone realize that families of individuals with developmental disabilities are holding the system together?

If my hectic life becomes too overwhelming, I might be forced to have my daughter placed in an institution - it would cost the state over $200,000/year to care for her while right now she has a loving home at no cost to the state!

The state must acknowledge and endorse the importance of families caring for their disabled child at home. Services to families should be of the utmost importance to avoid a real collapse in the system.

A Day in the Life of R--

Age 24

Diagnosis: Quadriplegia cerebral palsy, refractory epilepsy, developmentally delayed

Caregivers ages: Dad 59 Mom 57

2:30 – 3:00 am: Father up with R-- to change her diaper, calm her after a seizure  

5:00 am – Father Husband leaves for work so he can be home when R-- gets home from her program at 3:30 pm. Prepares meds before leaving – one less thing for mom to do when home alone getting R-- up and out as well as get out to work herself.

5:30 – 7:30 am: Mom prepare meds for R--, wake R-- up, undress her, had to strip bed and put sheets in washer, gave her sponge bath, put on new diaper, dress her. Get her down the hallway, slight drop seizure on the way; let her fall gently to the floor in order to not strain my back too badly. Once seizure stops help her up. Finish going down hallway and sit her down at top of steps. Let her “bump” down each step while going down the steps backwards in front of her to prevent any falls. Put her in wheelchair, give her her meds, and help her eat breakfast. Eat at same time. Wash her face and put lotion on. Brush her teeth and fix her hair. Make sure she is safe in her wheelchair looking at a book while I finish getting ready for work. Get her coat and hat on and wait by door for county bus to take her to her work program. Discover the lift is not working because it has snowed and iced over during the night. Have to take R-- out of her wheelchair and place her on couch. Fold up wheelchair and bump chair down 12 icy steps to the driveway. Set up chair at bottom of steps. Get old bathroom rug and put at top of steps. Bring R-- out and have her sit on rug and slowly pull her down the steps with some help from the bus driver. Say goodbye and rush to work.

3:30 – 5:30 pm: Father gets home just before bus arrives. Take R-- off the bus lift and push her wheelchair across gravel driveway to lift which is now working as the ice has melted during the day. Get R-- out of her wheelchair to check her diaper status as well as if her clothing is wet. Change diaper and/or clothing, wheelchair pad cover pad as needed. Offer R-- water and a snack. Either set her up to watch one of her favorite movies, at table to color/work on craft with assistance if time allows (which is the case most days) or eat a snack. Begin to fix dinner. Cannot run any errands on the way home or will miss bus or once at home as no one is there to stay with R--l. Brings in box of delivered diapers/pads and puts them away.

5:30-7:00 pm: Mom arrives home and helps finish getting diner ready. Put laundry in washer as needed – at least 1-2 loads every day depending on sheets overnight, wet clothes coming home etc. Dad checks air in wheelchair tires and tightens any connections as needed. Assist R-- in washing hands and getting to the table. Assist R-- in drinking and eating dinner. Help R-- clean up after dinner and assist her back to couch to watch TV. Fix her lunch for the next day. Fill prescription bottles for work meds and put in her bag.

7:00-8:30 pm: Undress R-- to give her shower. Slowly walk her to the downstairs bathroom where her shower chair is located. Must always be ready for a drop seizure which she has almost every evening while going to or from the bathroom. Help her get into her shower chair which requires some lifting. Complete assistance is required in showering R--. Comb hair, brush teeth, put on deodorant. Lift her out of chair and onto towel on floor. Put diaper on with extra pad for added absorbency, powder. Put on nightgown, socks, and slippers. Walk her back to couch. R-- has a drop seizure and need to let her fall gently to the floor, Dad also almost falls. Prepare meds and give to R--. Let her sit up for 15-20 minutes as she is a silent aspirator. Walk her upstairs and help her get into bed. Completely tuck her in and put up side rail. Have to go back upstairs 1-2 times each night to reassure her and tell her to go to sleep.

 
 

W-- doesn’t sleep through the night like most of us.  When ever he is over-taken by sleep that’s when he sleeps.  It is almost as if he is afraid of missing something so he must remain awake.  But when his body does give in to sleep he becomes annoyed when he awaken by sudden noises.  So what does that mean?  W-- can and is awaken most of the night when others are trying to sleep.  He also wants attention while he is awake and makes noises by banging on the walls causing holes and rattling the radiator cover back and forth or even displacing his continuous running CD player.  W-- has been known to open his bedroom door and come out into the hallway and either whine or open the doors of other bedrooms and whine! He prefers to open the door of his parents and whine.  Waking up all who are light sleepers. 

 We start his day at 7:30 am Monday through Friday.  Up for a bath every morning.  First he is placed on the toilet, just in case, even though he wears pull-ups we still are consistently trying to potty train him with repetition.  However he will not tell us when he has to go to the bathroom.  W- now weighs 130 lbs.  He must be lifted onto the toilet, we brush his teeth and if he needs to be shaved his step-father does that, Mom in not well versed with that task.  Then he is washed by either his mother or step-father.   When done W-- is removed from the tub and he crawls back to his room where his skin gets lotion, powder, and perfume and dressed for the day.  W-- likes to either listen to his music or the television while this is taking place.  Then it is breakfast time.  W’s favorite breakfast is oatmeal. We feed him and give him his seizure medication.

  Monday through Friday W-- attends Adult Day Care in Cherry Hill, so he must be prepared for the bus.  W-- can crawl down the steps where his wheelchair awaits him.  His lunches are prepared the day before and sent with him to program.  W-- does not chew. His meals mainly consist of soft foods that are easy for him to mash up with his gums, even though he has a full mouth of good teeth.  The bus arrives around 8:30 am.  The time in between the bus coming for pick up leaves us time to accomplish other tasks for him and ourselves considering he can not perform any task on his own; clean his room, wash clothes, prepare meals etc.  He is at this time total dependant care.

 W-- returns home at 2:30 pm He is either greeted by his sister or his mother.  His step father leaves for work at 1:45 pm and currently mom has been laid-off and now seeking self employment.  When his mother was working full time, W--’s sister was responsible for him when he returned home from school.  His sister comes home from her school at 2:15 pm which leaves her no time for extra curricular activities at school. I personally thank God for her, life would be difficult without her there to pick up the slack.  She shall be greatly missed when she does go off to college next year.  She makes life easier for me to attend my various appointments in the late afternoon and early evenings Monday through Friday.  Whenever I am out of town I must call for back up so W--’s oldest sister will come or his grandmother.  So all the weight does not rest on the one sister and the responsibilities become a burden to her.  His stepfather works late hours.,  He picks up the slack so that the young people can enjoy their Saturdays.  I prefer someone to watch W-- that we know because W-- can not speak for himself.  The respite cash option plan allows this to happen.  His care must be done in his own home because the slightest changes bother him.  His personal care and well being is of the utmost importance to me.  It brings me peace of mind enabling me to do what I must do to run the household and care for my husband and other children.

 W-- is not usually tired when he returns home from Day Care and is ready to either watch TV or listen to his CD’s.  But he wants your attention first.  Someone must accompany him upstairs to his room and set him up for the evening by turning on the radio, or TV and sometimes both.  Take off his coat, shoes, and make him comfortable until dinner time. 

 At times he wants dinner as soon as he comes in by shouting EAT, EAT.  Cookies will usually hold him until his dinner is made.  No sandwiches will do.  W-- requires a full course meal for a growing man.

 After dinner if mom has an appointment W-- is prepared before I leave.  If not I will wait until later in the evening 8:30 pm-9 pm.  W-- ‘s diaper must be changed or he is placed on the potty which ever happens first.  Footed pajamas are always used because W-- crawls on the floor and often bangs and scrapes his knees even thought the floors are carpeted, he finds a way to get scraped.  He bounces on the floor and squeezes his way into small areas for comfort.  W-- is given his evening meds with his night time snack, his music is adjusted and he’s ready for bed.  W-- does not go to sleep, but this is his routine for whenever he does decide to go to sleep.  Since W-- has the capability to open his door to his room he will from time to time come out of his room and sit in the hallway outside his parents door, sometimes he will go down stairs depending upon the time of day and go back into his room at his free will. 

 W-- is a constant watch, so someone is always present  Sometimes we go through life without really noticing the things we do because we do them without thought.  I would have never been aware of how much is done until my daughter told the school counselor that she did nothing outside of school.  Every day she does more than the average teenager and has done this since the age of three.  She lives in the house with a special needs person.

 And each day your life is different because theirs is different.   I personally dare to imagine what life would be like if someone had to make every decision for me!  Would they consider what I wanted to eat or wear?  Where I wanted to go, what I like or dislike or even what I considered to be fun?  Someone living vicariously through you-

 Freedom of choice is a powerful thing! 

     This is a composite picture of several days detailing the total care that I provide for my son, N-. N-- is 23 years old diagnosed with multiple handicaps which include profound mental retardation, cerebral palsy, mild-moderate dysphagia (swallowing difficulties), severe allergies, autistic tendencies, and self abusive behavior. He is nonverbal. I am responsible for managing six medications that he takes daily. N-- attends the Durand Adult Day Program in Mount Laurel from 9:00-2:00 Monday through Friday. N-- resides at home in Marlton, Burlington County with my husband, age 57 and myself, also 57. I have three other adult children who are married with families of their own.

     Here is a composite description of N--’s care over several weekdays:

12 midnight-7:45 a.m.

     N-- sleepwalks several times during the night. I guide him back to bed each time. During the night he wakes up because he has urinated and it has soaked through the diaper to his pajamas, sheets, and blanket. I wipe him down, change his diaper, put on dry clothes, and change the sheets. He goes right back to sleep. I take the diaper, wet clothes, blanket and sheets down to the laundry room. The next morning I will need to wash the urine soaked clothes, blanket, mattress pad, and sheets.

7:00 a.m.

      I awake, prepare N--’s breakfast, morning medications, and pack his lunch for the adult program he attends. His food preparation requires more time due to his swallowing difficulties. For breakfast I prepare a corn muffin by mixing in milk and butter and warming it in the microwave. In addition, I heat up water for oatmeal. His juice requires a thickening agent. For lunch his turkey must be chopped and blended with mayonnaise in a food processor. His crackers are crushed before mixing with yogurt. I include a banana which the staff will mash and blend in with the yogurt. I am responsible for providing the staff with his medications, diapers, and Thick-It.

7:45 a.m.

     I wake N-- and physically have to transfer him from his bed to the floor. I adjust his dry diaper, or change a wet diaper. I dress him as he helps move his body, and I brush his teeth. N-- struggles with teeth brushing, pushing me away with both arms, until I can secure at least one arm. At this point, he will open his mouth for me, allowing me to brush is teeth. Sometimes he tries to turn over to avoid teeth brushing. The teeth brushing routine is very difficult for one person to perform.

8:00 a.m.

     We go downstairs for breakfast. N-- requires hand over hand spoon feeding. I hold his drink up to his mouth for him to take a few swallows in between solids. He requires time for swallowing after each bite. I put on his shoes and coat, and we wait for his van to arrive. He is picked up by 8:30 a.m. each day.

9:00 a.m.-2:00 p.m. He attends the Durand Adult Training Program in Mt. Laurel, New Jersey.

 2:40 p.m.

     N-- arrives home from his program. I take off his coat and shoes, and prepare his Gatorade, adding Thick-It and Miralax (for constipation). He watches TV, two of his favorite shows, Curious George and Arthur. Sometimes he goes up to his room to rest on the floor. I have attempted toilet training, but 95% of the time he urinates in the diaper after sitting on the toilet for 15-20 minutes. This usually requires a complete diaper and clothing change, since it is a large amount of urine and soaks through to his clothes.

4:30 p.m.

     I take N-- out to Shop Rite to pick up a few groceries. I put his coat and shoes back on, and walk with him out to the car. I hold his hand the entire time walking from the car to the store and while I am shopping. Once in awhile he has run from me, but for the most part, he stays by my side. I am extremely careful to monitor people around me, because he has approached people in the store. He has pulled hair, grabbed badges of employees, and pulled at someone’s shirt to see the design on the front. He will sit down on the floor if we are in one area too long. He enjoys going out, and I make the effort even though it can be difficult. Occasionally, he will have an episode of self abusive behavior in a store.

5:30 p.m.

     When we return home, I prepare dinner. N-- looks at pictures that I have laminated for him. He has a bowel movement that needs to be changed before dinner. His bowel movements are large, soft, and messy due to the Miralax that he takes. I use gloves, wipes, and a washcloth to clean him thoroughly.

6:00 p.m.

     I shred chicken, mix with gravy, then mash potatoes, add butter and milk, and grind broccoli with gravy and water in the food processor. His juice again needs to be thickened. He takes medication for stomach discomfort before dinner. They need to be crushed and added to yogurt. During dinner he becomes distressed because he needs to burp. He starts pacing back and forth leading to a full blown episode of self abusive behavior. I am alone because my husband is working late. I try to keep him from hurting himself, but he is strong and determined to rub his hands back and forth putting pressure on his forehead and between his eyes. Sometimes he tries to drop to the carpet causing more injury to his hands, forehead, and between his eyes. During these episodes I have been injured attempting to keep him safe. These episodes can last a few minutes or twenty minutes. He screams and rants for the duration of the episode. My goal is to calm him down as quickly as possible and place him in a baskethold for 30 seconds. I tell him that he is not allowed to hurt himself. If my husband is home he jumps in to manage the episode. Many times either my husband or N-- is injured during the course of the episode. My husband has expressed to me that the self abusive behavior is too overwhelming for him to handle anymore. 

6:30 p.m.

     I finish feeding him his dinner hand over hand. I lift his drink up to his mouth to drink between solids allowing him time for swallowing. He may get up during dinner to walk around, but returns to the table with encouragement. I praise him when he follows directions.

7:45 p.m.

     I mix his medications in yogurt or pudding. These medications do not have to be crushed. He is cooperative.

 8:15 p.m.

      I instruct him to come upstairs with me for his bath. I take his hand and we walk up the stairs. I praise him for complying. He enjoys bath time. I shampoo his hair, then wash and rinse his body. I shave him every other day. I physically start to lift him to his knees, and he stands up for me. I dry him and apply lotion to his entire body. I put on a T shirt, his diaper, and pajama pants. His nasal spray is next. He is cooperative.  I read a few of his books before bedtime. Last, I struggle to brush his teeth again. 

9:15 p.m.

     I take his hands and he lifts himself up off the floor and gets in bed. I praise him for his cooperation, cover him up, hug and kiss him goodnight. I put on a CD of violin music for him to listen to as he falls asleep.    

N--’s weekend

     N-- requires the structure that his day program provides during the week. I attempt to take him out for a car ride, grocery store trip or a trip to the park, also horse back riding ( in the nicer weather). He enjoys watching a video in the afternoon. I can not fill the time required. His episodes are more frequent on the weekends. Sometimes, we use respite money provided by DDD to take a break from caring for N--. This benefits him, also, since the respite worker plans an active day for him, or just a change of scenery.

 

 

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