Recently, my caseworker asked me to make a list of all the things I do for Ryan. Daily, weekly, appointments, driving, etc. ALL. OF. IT. And the list is long. And he is 14 years old. Today!!
As I wrote and reviewed the list, asked hubby and our beloved behaviorist/sitter to give input, well, it made me kind of sad. Sad to see it all there in black and white.
His incredible DEPENDENCE, and lack of INDEPENDENCE.
I am going to share it here. NOT TO MAKE YOU SAD. Not to make you feel sorry for him or me. Rather it’s for my taking down the story of our lives, and the book I will write someday.
You can skim it, BECAUSE the good stuff comes after this exhaustive list!
- Get him up in morning; provide each step of the morning routine
- Brush teeth for him
- Make sure he doesn’t eat the toothpaste
- Comb his hair for him
- Make sure he puts on clean clothes daily
- Put sunblock on him
- Every meal prepared for him
- Watch diet and portions ALWAYS
- Every snack prepared for him
- He eats very fast; must watch and tell him to slow down and take smaller bites
- He is unaware of overstuffing his mouth with food
- Keep to a food schedule daily; always plan ahead
- Keep fridge and cabinets locked to protect him
- Cut his food into smaller bites
- Pour/serve every time he has something to drink
- Give him his vitamins/supplements every morning with applesauce or yogurt
- Put his shoes on; tie his shoelaces
- Start shower; make sure he does not turn water too hot; make sure he does not slip or fall
- put out extra towel or mat in bathroom floor so he doesn’t slip because he paces in bathroom after shower
- Do his laundry for him daily; he uses new towels daily (obsessive)
- Make his bed; wash his sheets/blankets often due to dust allergy and cat allergy
- Re-make bed in middle of night if covers come off
- Cannot be left alone ever
- Administer his Growth Hormone shot nightly
- Give him his medicines for anxiety nightly
- Drive to all appointments
- Ortho appts monthly
- Dentist appts
- Orthopedic dr 1-2 x a year
- Endocrine dr 4x a year
- Go to annual IEPs, & school team meetings periodically
- When out in community, he always must be reminded of safety; NO AWARENESS of safety in parking lots or crossing streets
- He always needs to be entertained or needs an activity and watched
- Must watch for skin-picking; picking off scabs
- Incapable of self-regulation when it’s hot or cold outside or inside
- Has a high threshold of pain so he won’t necessarily say if he is hurt like internal pain or colds or headaches
- Manage behavior ALL DAY LONG, every day
Wow, right? And yet, the gifts that Ryan has given to me, are priceless and of eternal value.
What Ryan does/has done for me:
GIVEN ME–Compassion: I am now so sensitive to people in crisis. I ACHE so much when I see others suffering through loss, illness, cancer, divorce, death, and of course, children with any medical need or challenge or disability. It sometimes paralyzes me into IN-action for anyone because I don’t know what to do for them.
GIVEN ME–Perspective: When you have an un-perfect family, riddled with all kinds of ups and downs, crises, drama, and disappointments, you realize how there is really NOTHING in life you can control. But your thoughts, attitude, and actions. You can’t control anyone or anything else. (I think Motherhood in general wakes you up to this reality.)
You also realize what is MOST IMPORTANT in this life. And what is not. And WHO is not. Living with disability gives you free reign to chop off all the nasty lists of SHOULDS and all the shallow relationships. You don’t have time or heart for it. (I’m still working on the should-ing on myself.)
GIVEN ME–Gratitude: The practice of gratitude is truly a weapon against bitterness and resentment, in ANY difficult life issues or chronic hardship. With daily journaling (in past) or in yoga weekly or in prayer or any moment of any day, I can find something to be grateful for. You can, too. Think about those things all the time and you fill your heart and mind with joy. AND–you protect against a hardness that can settle inside your soul, when you deal with a daily challenge. It has definitely softened me. I look back on some of my earlier writings, and honestly, I cringe, at some of my sarcasm.
GIVEN ME–Reminders to Pray: He is my daily prayer barometer. EVERY day he asks me if I am praying for someone who is sick or moving or had surgery or is going on a trip or having a birthday, or ANYTHING he thinks of. It is so touching to me, that even in his low-IQ, cognitive impairments, his faith is so rich. And even in his PWS–ego-centrism, he really thinks about others’ hurts or needs. He has a GIANT heart.
Happy 14th birthday to my sweet sweet Ryan!!! Your 101 pound, 5 feet 5 skinny frame is so full of love and goodness and kindness.