Bootstraps: If You've Got Them, Yank Away

If you read this to the end you are probably family OR you are a friend. Thank you for taking the time!  Where have I been? Why aren't I blogging?   Here's why.  This is the last "summer vacation" for my oldest son who is on the autism spectrum before graduating. I'm trying to make it a good summer for all and also look ahead for what life might be like after school ends.   

Here's a video about planning for adults on the autism spectrum after school ends.   It's about 12 minutes, and is a fairly good representations of challenges facing people on the autism spectrum and their families when school ends.  I like that there is truth and some hope in this video.  I love that the man who loves vacuum cleaners got a job vacuuming 4 days a week. "Doug getting a job vacuuming would be like me getting a job to drink beer and watch the Patriots," says Dad.

When people on the autism spectrum leave school in Maine they lose services. As an example, for adults with disabilities to receive housing services in Maine, there has to be proven abuse, neglect or exploitation in their present situations. The meager budget for housing for people with special needs has a waiting list close to 900 at present time, with about 20 people a year being taken off the waiting list to date this year.  If a young adult with developmental disabilities is placed on the waiting list today for housing, and placement in services continues at the present rate, they might receive services in 36 years, when they are in their 50's, and their parents are in their twilight years.  I look to families with older children with special needs to see what might lie ahead. I don't like what I see, truthfully. It  makes me anxious about my son's future.   

Here is one example:

The Spencer family is looking for housing services for Katie, their 32 year old daughter who is medically fragile.  The family is no longer able to care for Katie.  The mom is ill, and taking chemotherapy, trying to work, and their daughter has been refused dayhab services because she has developed a condition where she faints unexpectedly.

One commenter on the article said it was "despicable" that these hard-working parents should expect the government to help their daughter.  He states he pulled himself up by his own bootstraps and believes that extended family should step in to help the family out rather than look to the government for help for their daughter. Which assumes that the family needing help has family nearby, ready and willing to help. Some families do, some families don't.  

I believe bootstrapping is a myth.  All the successful people I know started off with help from another person, whether it was with dollars invested or a person taking a chance on them when they were starting out.  Sure, they worked hard with the opportunities that came their way.  They worked very hard and put themselves out there.  Good for them and kudos to them.  But at some point their future faced a tipping point that someone else had the the ability to make it go one way or another. It's a rare person who created his or her own opportunity out of thin air.

What about those who don't have bootstraps?  Eventually the Katies of the world will be on their own.  Their parents will die.  Will they be at the mercy of the views of the howdyneighbors of the world? I believe that how the Katies of the world are viewed and treated are a reflection of the health of our society.

If you live in Maine, make your voice heard for Katie.  

Dixie Redmond


Michi Ball / Prairie Prims said...

I hear you..can't say I have walked a mile in your shoes. But to some degree these concerns are concerns for all parents. Raising a special needs child just triples these concerns and I am so glad for your thoughtful forethought for a memorable summer! You are a great parent! It is hard to grab boot straps or cut the cord! Oklahoma is short on social services both for children and adults! The system is designed for folks who need it, not simply the uneducated! Another of our states problems. Best wishes for heart is swollen as well as my eyes, God Bless You!

Unknown said...

I feel for you and your family. My son is on the spectrum. We struggle with plans for the future too. He is just 12 but is the size of a grown man. People expect him to be so grown up already. I have no idea how independent he may or may not be as an adult. My prayers go out for all those facing or living this struggle. I know you will hang in there for your son, that is all we can do in the moment.

Dixie Redmond said...

Michi, thanks for the blessings sent. :-) I am very concerned about the Turner family.

Dixie Redmond said...

Hi, Wendy -

You hit on a good point. All any of us can do is our best in the now. I want to be hopeful for the future, but I don't control it.

Robin's Egg Bleu said...

Thank you so much for sharing this and the video. My heart goes out to these families. I have a friend whose daughter is 27 (I've known her since she was 15), has what appears on the surface to be medium functioning Asperger's Syndrome. She is functional whereas her obtaining an education is concerned. She in fact has just received her Masters Degree. A fabulous accomplishment anyone, let alone for someone with these challenges. Challenges though, that she could not have overcome if her mother didn't attend school and her classes with her every single day, communicate with her professors, etc. But mom doesn't want anyone to know 'that part' of it.

Unfortunately, her mother refuses to share her daughter's special situation with anyone (even her oldest friends) and pretends that her daughter is simply 'brilliant' and does what she can to cover up the painfully obvious societal challenges her daughter faces. When this young woman's parents are gone, who will advocate for her when her disability has been covertly 'hidden' from society most of her lifetime? I warrant that she herself is unaware of it.

I understand being in denial of one's child facing these obstacles. I understand wanting to protect your child from all harm and unkindness. I understand wanting to apply a veneer of 'normalcy'to a child who is so different.

But pretending these obstacles don't exist and investing such energy into an attempt to prevent others from noticing do not benefit the child in any way. I worry for my friend's daughter. Her mother apparently not only feels she will live long enough to continue the charade, but has deluded herself into the belief that her child will be a famous, world renown (History Channel) historian/commentator who will be able to support and take care of HER in her twilight years. This is an only child and if she cannot even walk to her classroom alone, how on earth is she going to care for her parents in their old age?

Mom goes so far as to take her to a psychic who tells her everything she wants to hear, from the name of the man who will marry her, how many children she'll have, the sex and the years they will be born. In fact the ($325.00 an hour) psychic has now brainwashed the mother and daughter into believing they themselves are psychic and will change the world with their abilities.

Heartbreaking, just heartbreaking to witness. This girl has never even had one single friend of her own. Mother is her constant companion, and she's not able to enter into a conversation that her mother isn't involved in without instant intervention. She's that deathly afraid someone will determine something is 'amiss' with the girl.

Dixie, I applaud you and all parents facing these challenges by stepping up and advocating for your children, fighting for them. Unfortunately, there are probably just as many if not more, who prefer to live in the shadows and deny their children the help they will need once the parents have either passed on or are in need of care and advocacy themselves.

Bravo for sharing the message and doing what you can to bring this into the forefront.

Dixie Redmond said...

Hi, Robin -

I can understand this mentality. When children were diagnosed in the late 80's early 90's parents were taught that you must keep your children busy and engaged at all times else they retreat from communicating and engaging with the world. The challenge with that is, who is really engaging? Eventually the engagement has to be self-initiated for it to be an expression of who that person is themselves. I'm so glad you posted because this gives me a different vantage point in thinking about my son. I'll think more about that and share as I can.


"Do not let what you cannot do
keep you from doing what you can do."

John Wooden