Category Archives: Autism

Senator Lamar Alexander Considers Job Training for the Handicapped as Entitlement

My letter to Senator Alexander and his reply. What do you hear?

Dear Senator Alexander,

Tennessee’s exemplary Medicaid-funded Employment and Community First Choices program is enabling high school graduates with autism to work, pay taxes and contribute to the economy. Because Tennessee cared about individuals with disabilities, many are now living productive and active lives in our communities.

But, per capita caps, block grant funding, and Medicaid cuts, will seriously curtail this model program aimed at helping people help themselves instead of just being in custodial care.
Please find a way to keep helping the least of our citizens fulfill their potential and lead productive lives.

Eileen Norman (Grandmother of a 19 year old graduate with autism.)

Dear Eileen,

Thanks very much for getting in touch with me and letting me know what’s on your mind regarding President Trump’s proposed budget for fiscal year 2018.

Fiscal responsibility is about setting priorities and keeping spending in check while supporting and maintaining our country’s economic competitiveness and national security.

The president has suggested a budget, but, under the Constitution, Congress passes appropriations bills. As a member of the Senate Appropriations Committee my priorities are national defense, national laboratories, the National Institutes of Health and national parks.

We will not balance the budget by cutting discretionary spending, which is only 31 percent of spending and is already under control because of earlier budget acts. Runaway entitlement spending – more than 60 percent of spending – is the real cause of the $20 trillion federal debt. With Medicaid reforms in the health care bill, Congress is taking an important step in addressing entitlement spending. If we don’t make tough decisions now, we’ll have let America slip from the hands of the ‘greatest generation’ to the ‘debt-paying generation’ with nothing to show for it but the bill.

I’m glad you took the time to let me know where you stand. I’ll be sure to keep your comments in mind as budget and spending proposals are debated in Washington and in Tennessee.

Sincerely,
Lamar

Medicaid entitlement of the handicapped?   Entitled handicapped?   A new concept for me!

The Blessings Beyond Measure of Loving a Handicapped Child

The gift of learning to love unconditionally.
The gift of realizing that life is about becoming the person we alone were created to be.
The gift of learning to want all others to succeed in their own journey.
The gift of sheer joy over small, but difficult accomplishments.
The gift of living in the present.
The gift of freedom from image and others’ opinions.
The gift of your best self being called forth.
The gift of patience.
The gift of tenderness toward all who are vulnerable.
The gift of humane values.
The gift of courage.
The gift of seeing beauty in those different from yourself.
Anyone who has not been blessed with the opportunity to love a handicapped person, needs to attend a Special Olympics to experience these gifts.
The moment of pure grace for me was when one of the children fell down in his race and the other runners all turned back to help him up. And every child was thrilled with finishing the race no matter in what order they came to the finish line. Each parent cheered equally hard for every child in the race, not just for their own.
The greatest blessing is realizing that life is not about winning, but about loving.

“Warning! It’s Monday. Pity Party Ahead

And then comes the morning, yesterday’s sorrows behind? Maybe, maybe not.
I thought my faith would grow stronger and it would be easier in old age with less needs, children grown, more wisdom. Well, it ain’t necessarily so. Many days it’s a struggle to just stay physically functional. Wisdom seems to have only come about seeing how I screwed up in the past. Too soon old, too late smart sums it up. Grown children have troubles I can’t fix and that I worry that I caused somehow. I have more dead friends than alive ones and the ones I still have are also struggling. I find myself facing the probability of living alone for the first time in my seventy-nine years of life. I love my grandchildren more than life itself, but have no say about what happens to them. And physically can’t do things for and with them like I used to enjoy so much. And people, that I have grown to love, leave and don’t look back. And while I know these are necessary losses and part of my journey with God, on the days when I can’t see His footprints, it’s a struggle to stay emotionally functional. I quit crying some seventeen or eighteen years ago, when dealing with heartbreak over grandchildren born facing incredibly hard problems, because I thought if I ever let myself cry, I’d never stop. I was right. I’ve cried so much lately, I should be dehydrated.
I never was very good at persevering through things. I usually was good at finding a way around or out of them. About thirty years ago, I felt that God was challenging me by giving me a new name, “Perseverance.” I did realize even then, that this wasn’t necessarily good news about my future years. But, I have learned with grace, to persevere. I have even learned to laugh while gritting my teeth. (Not easy on any level 🙂 ) But sometimes, I just don’t want to. Today is one of those times
But, I will. I will grit my teeth, hang on with my fingernails, and be thankful for all the beauty, love, and joy God has given me in my life. And with Her grace, I will dig for that damn pony in all this manure. 🙂

 Addendum added four hours later:

OKay, in an attempt to look on the brighter side of things today: Getting into pain from vacuuming means I can only manage one room’s floor before sitting down a while to get out of pain. This is good not only because a rest does get me out of pain, it also gives me a time out to go on-line.

And in my time spent today preparing for my women’s scripture class tomorrow, I read the funny little story about Jesus needing two tries to heal the blind man, because after Jesus tried once by putting saliva on his eyes, the man still couldn’t see other people as being like himself. It helps to know that people who don’t have natural empathy for others, may eventually be healed and acquire it. But, I haven’t figured out the significance  of using saliva yet!  Unless it means that spitting in someone’s eye doesn’t do much good. 🙂

So, this Monday has had goodies to balance the baddies. Thanks be to God!!!

The Incredible Blessings of Loving a Handicapped Child

Learning to love unconditionally.
Realizing that life is about becoming the person we alone were created to be, no more and no less.
Freedom to want everyone to succeed.
Experiencing sheer joy over another’s small, but difficult, accomplishments.
Recognizing the gift of living in the present moment.
Freedom from living for image or other’s approval.
The gift of our own best self being called forth.
The gift of patience.
Developing tenderness toward the vulnerability of others.
The gift of seeing beauty in everyone.
Developing humane values.
Growing in courage.
The greatest blessing is learning that life is not about winning, but about loving.

Ode to Those that Climb the Mountains of Disabilities

A granddaughter and a great-grandson graduated from different high schools this weekend.  They each beamed with pride as did I.  It has been a long and arduous journey for both of them.  One suffered the confusion of spoken language that Autism brings and the other the confusion of written language that Dyslexia causes.

They were blessed because they each had caring parents and grand-parents, special teachers and even therapists. But ultimately the challenge was theirs and no one else could do it for them.  They made it because they persevered.

I never was sure that the hours I spent trying to help them made anything easier for them, but it formed a bond for me with them that will always keep them in my heart in a deep tender spot soft from tears unshed and I pray that I will always be in theirs, even when I’m no longer here.

Their journey isn’t over and neither are the challenges they face, but their graduation days mark an accomplishment that few can understand.  Often it has meant struggling with things that seemed simple to others, so their amazing achievements went unnoticed and unsung.  And because their differences set them apart, they often walked alone, unnoticed and unaffirmed.

But those of us that have shared their journey know that while others jumped small hurdles, they climbed mountains to get to the same goals.

We saw and heard the fears, discouragement and frustration they overcame, so we celebrate their achievement as unsung Olympian Medalists in courage, determination and perseverance.

The Gifts Beyond Measure of Loving a Handicapped Child

The gift of learning to love unconditionally.
The gift of recognizing that life is not about competition, but about becoming the person we alone were created to be.
The gift of wanting others to succeed in their own journey.
The gift of awesome joy over small, but difficult, accomplishments.
The gift of the present moment.
The gift of freedom from living for image or others’ opinions.
The gift of your own best self being called forth.
The gift of patience.
The gift of tenderness toward all those who are vulnerable.
The gift of humane values.
The gift of courage.
The gift of seeing beauty in those different from you.
Every person who has not been blessed with loving a handicapped person, needs to attend a Special Olympics to experience these gifts.
The moment of insight for me was when one of the children fell
down in his race and the other runners turned back to help him up.
And every child was thrilled at finishing their race, even if they were the last to come across the finishing line.
And every parent cheered for all the children, not just their own.
The greatest blessing is learning that life is ultimately not about winning, but about loving.

Autism Awareness: An Ode to our Hadley

An Ode to Hadley…….Who makes life shine for me even on my worst days.

This is Autism awareness month. It helps me remember how far my granddaughter Hadley has come and how much of that is because of her parents. They got her cognitive therapy very early, helped her communicate with sign language and build verbal language on that, and they have given her every chance they could, even now at sixteen driving her across town to a peer Social Group. Her journey has involved all types of therapy, tutoring, meds, hard decisions, time, money, courage, perseverance and love. And every bit of it is visible now in her competence and kindness.
She and I talked today about Autism making language skills take longer to learn, but that she is persevering and getting better and better at reading and speaking and understanding language. We talked about how competent she is at visual learning. She watches people do mechanical and electronic things and seems to be able to do them immediately with confidence. She knows that I am not good at that sort of thing, and she often steps in to save me the struggle. We have a road sign Bingo game she played on the hour trip to my house as part of preparing her to learn to drive. She picks up on the visual signs and their meaning very quickly. She simply doesn’t give up.

Two days this week with Hadley:

Several days this week, I felt really good and managed to get a lot done toward getting our house ready to put on the market. Saturday was not one of my best days, but when my Tylenol kicked in, Hadley and I got the carport and entrance area blown off, hosed off, and spots scrubbed!! I just directed and helped
move stuff and unwind the hung-up hose. Hadley was awesome. I had blown and vacuumed the porch and washed furniture and toys on Friday, so I just poured soapy water on the porch floors and Hadley scrubbed with a push broom. Finally everything dried and we put the furniture back in place. What a difference her help makes! She loves clipping shrubs and I had planned to let her do some today. but I did a little a day or so ago and I’ve got what looks like some spots of poison ivy in among my psoriasis and heat rash!! So we will skip that! Later after dinner, Hadley, energized by tacos, was determined to earn more money. She went back outside to work on something for granddad for another hour. I headed to a hot bath. Couldn’t eat tacos, because I broke one whole side off my upper back tooth, the tooth that anchors my upper front teeth. Oh happy day!!

This morning, Sunday, I was paying for Friday and Saturday with aching muscles, allergies, sinus headache, inner ear dizziness and nausea, the cracked molar, poison ivy on my right inner arm, and a pinky nail torn to the quick…..just some of the joys of being seventy-six.
But in spite of all that, I was amazingly happy, because my heart rejoices in Hadley. She is so kind and helpful, extremely patient, and very self sufficient. She even accepted graciously that I couldn’t take her to the mall like I had promised. How many teenagers with hard earned money in their pocket would be gracious about delaying the gratification of shopping? Never-the-less a teenager who struggles with Autism. She has come so far, fixing her own meals, being careful to put down a mat when eating at my desk, and cleaning up after herself, often even spontaneously hugging me and telling me she loves me.

Thank you God and Tommy and Heather for the gift of Hadley.

Gifts of Age (Part Seven): Aging Like Fine Wine by Dancing in Our Hearts

Dance of Youth

New bottles seldom hold particularly fine wine. Likewise, the gifts of age don’t come in teenaged bodies. On the outside I’m a short, plump, white-haired old lady on a walker. But inside me still live all my younger selves. And the imp inside has gotten braver with the passage of time, so I challenge other little old ladies on walkers to races and to consider themselves armed and dangerous. I plan to get tee shirts that say, “Bare Toes Beware” and “I Can Do Anything You Can Do, Just a Whole Lot Slower.”
Being in my mid-seventies, not only means that I’ve run out of a future full of possibilities, it also means that I’ve actually seen the consequences of some of my major screw-ups in my younger years. And part of my spiritual journey has involved developing enough self-awareness to recognize a self-serving element even in the good things that I do. Parting with delusions is a painful process, but like most difficult things in life, it has an up-side. It eventually makes it easier to live lightly, unburdened by carrying pockets full of stones to throw at others. All those cracks in my façade make that quite hazardous.
Letting go of physical agility and mental acuity as major parts of our self-image is one of the most frightening challenges of this part of the spiritual journey. When I was young and lithe, one of my few natural talents was ballet. In fact, I often expressed my emotions through dance. Once, I danced in sheer joy at the awesomeness of God, while reading The Well Springs of Life by Isaac Asimov. He used several diverse sciences, that study both the macrocosms and the microcosms of the universe, to trace the incredibly orderly and unifying processes of evolution in all aspects of creation. Even such a small glimpse of the brilliance and glory of God was almost blinding. Verbal praise was simply not enough. This cried for praise with my whole self. I put the book down and danced to express my overflowing  joy.
I can no longer physically dance, nor do I have enough mental energy or short term memory to explore complex scientific descriptions of the glory of God in His creation. But age brings simple moments of grace that lift my heart and mind to dance on butterfly wings.
A grandchild whose journey through autism began with learning a few simple signs to ask for basic needs, now keeps me awake chatting past our bedtime. As I pray for energy to stay awake, I dance with delight in my heart at having this once unimaginable experience.
In another part of my series, Gifts of Age, I describe the timely sight of a cow-pile covered in golden Monarch Butterflies just as I was telling God that I was up to my neck in manure down here and asking where the heck He was in all this.  What a perfect symbol of grace.  Butterflies, the classic symbol of transformation, happen to need certain chemicals found in manure.  Problems that go beyond our human ability to solve can open us to God and the grace to grow.

And, believe me, old age is full of that kind of fertilizer.

Dwindling energies and a sense of time passing at warp speed force me to re-evaluate my priorities. Where do I want to focus my limited resources? On image? On possessions? On my aches and limits? On pleasure as a temporary distraction? On a past that I cannot change? On a future that may never come?  It seems more important now, to focus on recognizing the footprints of God in my daily life, on celebrating God’s presence in the small and ordinary, even in the heartbreak, and to share that awareness however I can.

No matter what our age is; today is the only day we actually have.  We can seize it, rejoice in it, and  dance in our hearts.