A New World

Marla called me early yesterday morning. Marla is a nurse in the NICU at one of our local hospitals, and she and I met while our sons played little league T-ball many years ago. She also stopped by to visit when Ashley was in ICU about 10 years ago. Actually, I hadn’t heard from her since that time.

Seems a new mom was having a tough time. She had delivered twins last weekend – one of them didn’t survive the birth, and the other was significantly disabled. The doctors feared that the baby was deaf and blind. They knew she had trouble breathing and very frequent seizures. Her survival wasn’t ensured, and after witnessing the mother’s breakdowns every time someone mentioned her child, Marla asked me to stop by to see if the mother would like to talk to me.

I agreed but I was scared to death.

The only qualification I have for helping someone like that is the fact that I have been through some tough times myself. But, I didn’t give birth to Ashley, and I feared that added another dimension I was definitely unqualified to address. But I couldn’t refuse.

I will meet this new mom tomorrow, and between now and then I need to think about what I will say and do. Hopefully some of you can help me with that.

I can say I understand her fears but my understanding only came after the fact with Ashley. I wasn’t there at Ashley’s birth. I didn’t wonder if my baby would survive those first weeks, and I never had the dark secret thought that it might be best if she didn’t.

I didn’t question what my life would be like when my baby was sent home with me. I didn’t wonder if I would be capable of caring for her, keeping her alive, and loving her. Most of the hard times came long before I brought Ashley home at age 2. How can I sit next to this new mother, hold her hand, and tell her I understand?

This mother had no choices really. I did. I chose to bring Ashley into my life. I chose knowing that my life and my son’s life would be turned upside down. I accepted the fact that I was entering an entirely new way of living and parenting, and even more than acceptance, I wanted it. This mother wanted two babies, babies considered ‘normal’, babies that would need care and love but not tube feedings and seizure meds.

What do I say? Or, do I say nothing and just let her know that I am there if and when she wants to talk? Do I tell her the baby is ‘special’ and that she, the mother, will find the strength to love and care for her daughter? How can I really say that when I don’t know if it is true?

Do I ask how her husband feels, if indeed she has a husband? Again, this will be a point around which we will not truly relate. I made the decision to adopt Ashley as a single parent. I know many marriages don’t survive the birth of a child with severe disabilities. Do I say that? Do I suggest she see a counselor as soon as possible?

I sincerely hope this is a parent, or parents, who can find the strength to love and care for their baby. But if they can’t, I hope they also have the strength to let someone else do it for them….and I don’t mean an institution.

I want to help, but first I need your help.

Just and Loving?

It’s tough to ‘keep the faith’ when one experiences a lot of negative things in their life. And often it seems like the negative things just keep piling up and up. You know, the thought that a lot, if not most, believers have at some point in their lives – ‘Why does God let bad things happen to good people?’

When I have had those moments, I tell myself to just trust that all that is happening is part of God’s plan and to just believe that there is a purpose to the turmoil. But, it gets very hard to remember and believe that when the bad things happen to an innocent child, and especially hard when bad things continue to happen over and over again through no action of that child.

For instance, children like mine and others with severe disabilities did not ask to be born they way they were. It was through the actions of their birth parents – drinking, drugs, no prenatal care, etc. – that their lives were determined. Innocent children who had no say in their future…

I can perhaps accept that at some spiritual level by going back to having faith when it seems God has a plan. What I can’t accept is when bad things continue to happen to these innocent children. Wasn’t it enough they were born with their disabilities – why must they be afflicted with other negative things beyond their control?

For example, these vulnerable children are subject to stares, bullying, exclusion and a host of other actions by people who ridicule them or think of them as less than ‘normal’. The parents of the children must battle every step of the way to ensure their children receive appropriate educations when teachers often ignore or exclude them, or just don’t believe they have any ability to learn. Or, there are the professionals (and that term is used loosely) who insist you prove over and over that your child really does have a disability, disabilities like deafness or blindness that seem nothing if not obvious. These children have to endure bus drivers and aides who treat them like animals, people who equate a physical disability with a decreased capacity to learn and understand, and neighbors and sometimes extended family members who act as if that child has something contagious. People speak about these children, not to them. They support them without befriending them. They suggest interventions and treatments to ‘cure’ them or make them more ‘normal’. They are very often treated less like human beings and more like creatures to be contained, trained, and locked away.

This is where my faith begins to crumble. It’s like kicking someone when they are down. These children bear enough of a burden from their disabilities – why must they further bear the burden of cruel or unenlightened people? Why does a merciful loving God allow that to happen, and especially allow it to happen over and over again?

These thoughts have invaded my mind even more now that Christmas and an increased spiritual environment are upon us. I don’t have any answers and I wish I did. I wish my faith was enough to relax my soul, but it’s not. I wish, no, dream, for a blast of positive into the lives of children who have lived primarily in the negative.

I want to believe in a God that can turn all this around – I really do.

Someone to Pinky Swear With

I have such fond memories of growing up and spending endless hours with my friends. We would play with our Barbie dolls, or build forts in the swamp behind our houses, or ride our bikes and skate. As we became teenagers, we would giggle about boys, try out makeup, and pull all the clothes out of our closets trying to find the exact right outfit for the school dance. My childhood was defined by those friendships, and by the passages through time that we shared.

But my beautiful daughter, Ashley, has never had and probably never will have similar experiences.

I have tried to encourage friendships between Ashley and her non-disabled peers, and often even other disabled peers. But those friendships never happen. A very few times, I would find a peer with a heart that wanted and tried to be a friend, but it never lasted. The lure of typical peers and typical activities would always win over communication difficulties, medical difficulties, and often limited responses from Ashley.

Ashley has never been invited to a birthday party or a sleepover. The only times she goes shopping at the mall is if we, her family, take her. She doesn’t talk or text on a phone, and she doesn’t share clothes or dreams with girlfriends. She has never been to a school dance or a school football game. She doesn’t have Facebook ‘friends’, and her teachers may refer to her ‘friends’ at school, but really they are not.

I don’t know how to facilitate those friendships. I don’t know how to create situations where friendships, lasting friendships, can happen naturally. And all that makes me very sad.

What about the others of you who have children with significant disabilities? Do your children have friends? How has that come about? And by friends, I don’t mean people who take pity on our children or view them as a ‘service project. I mean real friends. Friends like Paige, Rusty, and Diane from my past…

Someone please convince me that there is still hope.

Bring Them Together

A week ago, I wrote about a father who beheaded his son with disabilities. The father said the constant and ongoing care made him look at his son as an object rather than a person. Today in the news is the story of a mother who dropped her baby from a parking garage. The baby had an orthopedic condition that was correctible, but the mother was overwhelmed by the way the child looked. And, my blog is full of other similar stories.

In each of the cases, the offending parent is usually prosecuted and convicted. But I really wonder – does it have to get to that point? What if the parents had support early on, support that would help them learn coping techniques, support from someone who has ‘been there, done that.’

Obviously something is not working in our society when it comes to caring for a child with disabilities.

Many, many parents, probably even most parents, when confronted with raising a child with disabilities, will buckle down, educate themselves, and become even better parents than initially thought possible. The provide love and encouragement, care and consistency. They provide a future for their child.

And then there are the parents who do not.

I wonder if bringing the two together could make a difference. Would having a parent in a similar situation, a parent who has developed coping techniques, who has learned to bury the dark thoughts, who has become an advocate for their child, a parent who could serve as a role model for the new and/or overwhelmed parent begin to save lives?

I was lucky. I found a group of supportive parents who could be there for me. Parents who could help me navigate the systems which so often lack the understanding and compassion we and our children need. But in the beginning I did feel an intense isolation. I believed no one understood what my life was like, and I believed that everyone was judging me. It took action on my part to find my circle of parents, and I wonder if the overwhelmed parents are even capable of taking that action.

I don’t know who could connect the two. I don’t know who could set up a mentorship program that provided support when it was instantly and desperately needed. But I think it is an idea that should be tried.

I’m tired of reading about children who die – children who could have long happy lives.

Tears

The child’s father said that he took care of his son for many years and that he just started to look at him as no longer his son, but rather just an inanimate object.

The child was seven years old and had cerebral palsy as well as some other unspecified disabilities. He was fed through a G-tube and was unable to speak.

The child’s father took a hacksaw and decapitated his son and then purposely left his son’s head in a position that his wife would discover. Before the wife, who was out running errands, returned, a volunteer firefighter drove by and spotted the boy’s head by the side of a city street. When the police arrived, the child’s father was standing on the porch and told the police that it was just a crash test dummy and that he had done it as a joke. The police found the rest of the child’s body in a white trash bag nearby.

The boy’s name was Jori.

His father, in my humble opinion, should rot in hell.

I’m so sorry, Jori. I wish you could have been my little boy.

Louisiana Child Killing

265

Ashley has been on our state's debelopmental disabilities Medicaid waiver waiting list for 7 years. Each year, she receives a letter letting her know where she is on the list. This year, she is number 265. Seven years ago, she was in position 345.

I'll let this video explain our frustration and the frustration of hundreds of thousands of other families and individuals with disabilities.

Eating Out of Trashcans is not a Life

This is the last week of school for my children, and all of them have firmed up their summer plans…..except Corey, that is.

Ashley will be attending summer school for most of the summer. Classes only last half of the day, and every Friday is a day off. She has really enjoyed summer school in past years, and is looking forward to making yet another tie-dyed tee-shirt this summer!

Ronnie will be receiving some homebound school services twice a week for about an hour. It’s not enough to cramp his fun but is enough to ensure his skills with visual phonics remain on target. In late July, Ronnie will be having some major surgery, so his last month of the summer will be spent recovering from that.

Chip will be Ronnie’s personal care aide. He has already planned several activities to keep Ronnie busy and away from the video games!

And then there’s Corey. Corey is a less than mediocre student, and will be passing 11th grade by the skin of his teeth. His teachers and I don’t feel summer school is warranted because if he wasn’t motivated during the school year, trying to find that motivation over the summer is a lost cause.

So, several months ago, I began sharing information and phone numbers with him about summer jobs. He never followed up on anything. I pushed a bit, and asked if he had applied at Toys R Us (they had a help wanted sign posted). He applied but then told me the only thing they would offer is a job stocking shelves in the warehouse. Apparently such work is below him, and he declined.

Then I printed information out about volunteer opportunities, re-emphasizing to him that he had to work or volunteer, and if he didn’t I would make sure his summer was not a pleasant one. He is almost 18 years old. Sitting home all summer and playing video games is NOT an option. He hasn’t, to my knowledge, inquired about any of the volunteer opportunities.

So where does that leave Corey? Corey will be assigned lots and lots of jobs around the house – jobs he will not enjoy doing, but jobs that will keep him from melding with the TV. There is a shed to be cleaned out – lots and lots of ground to be dug up for a rose garden – an attic to clean out – a deck to waterproof – weeds to pull – kitchen cabinets to sand and refinish – and the list goes on and on.

Needless to say, I am not happy about this. Corey has decided his future rests with the military, and nothing between now and enlistment matters. I’m worried that the military is not really going to be an option (if he doesn’t graduate, for instance), or that even if he gets in, he won’t stay in. He would then have few if any job skills, and one of my biggest fears would be realized – he would end up back on the streets where he spent the first 12 years of his life.

Some of my friends say I am too hard on him. My response is, “I love him, and just want his life to be more than dirty alleys and food from trash cans.”

Forced To Leave Home, Part 2

Cheryl from the blog Finding My Way: Journey of an Uppity Intellectual Activist Crip, left the following comment on last Friday's blog post. I thought it important enough to repost here:

_____________________________________________

ADAPT had Syracuse/Cornell do a study that found that funds for the Community Choice Act would cost middle class Americans $6.07 in taxes a YEAR to keep people in the community. That's without factoring in the savings from all the institutions that would be forced to close as a result. Then we paid for a Harris Poll where 2/3 of Americans said they would support the bill before they even knew how much it cost. After they found out it, that number went up to 89%. Now what bill has an 89% approval rating? All you have to do is skip 1 trip to Starbucks a year. Here's a link to the fact sheet:

Cost and Benefits of the Community Choice Act

So, what I want to know is where do I send my $6.07
________________________________________________


Watching states balance their budgets by cutting services to people with disabilities is not the only way they are forcing more institutional decisions.
I spoke with a mother of a 15 year old young man who is severely disabled but who wants to stay home with his family. To accomplish that, the family must have the assistance of nurses around the clock. Unfortunately, they live in a smaller city in Virginia, a city not known for available service providers.

This young man is approved for nursing services and for enough hours to provide the assistance the family needs to keep their son home with them. But they can’t find nurses to staff the positions that have been approved. This is yet another example of how people with disabilities are being forced into making a decision to institutionalize.

I believe that our state Medicaid services should be required to maintain an adequate number of providers for the people with disabilities in the state. Whether that means raising salaries and reimbursements rates, or providing additional training, whatever is required to make sure that people have the support they need to stay in the community.

But there’s the rub – I don’t believe our states, or at least my state, wants people to remain in the community. Why else would our budget this year provide funds to build a new institution and not fund more community based waiver slots?

Forced To Leave Home

Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse's assistants to get her in and out of bed, bathed, clothed and fed.

In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.

Not a day goes by that I don't hear or read about how states are trying to balance their depleted budgets by cutting services to people with disabilities. Lulled into a false sense of budgetary security by the influx of stimulus money, the time to pay the piper is now upon state governments.

People with disabilities are being forced into institutions because home-based services are the first things cut. Where is the Olmstead Decision in all this? Don't our state leaders read the literature that has proven it costs more to keep a person in an institution rather than in their home and their community?

This article from the Wall Street Journal is just one of many more to come, I fear.

The Toughest of Times

One of my biggest fears as a mother is not being able to provide for my children. Given the current economic environment, and the fact that my employer is laying people off at an alarming rate, this fear is ever present.

But, I still do have my job. I am still able to provide for my family. Little has changed other than the cost-saving measures I have put in place over the last year. They are small things – like buying generic or store brands at the grocery store – but I believe that it can make a difference.

Two things happened this past weekend however to make this disastrous economy rear up and slap me in the face.

First, a friend of mine that is in her 50’s and who had worked for IBM for over 20 years was laid off. Her husband is in real estate, and not being the most eager beaver, almost never sells anything. That is nothing new, but now that my friend has lost her job, the meager amount her husband brings in barely buys the groceries.

My friend has searched and searched for a job with no luck. She is currently a sales clerk at a clothing store and bringing home minimum wage. The family is living on an equity line of credit, unable to plan for college for their high school senior daughter, and as she said, probably two months away from losing everything.

The second slap in the face happened when we posted something on freecycle.org. We had been going through all our Christmas decorations, and decided that we had too many lights, cookie tins, stuffed Christmas animals and other general decorations. We decided to post these on freecyle.org and give them to the first person who responded. Within an hour, 55 people responding asking for the decorations. Each one had a story, and the stories were all very sad, e.g. “I’ve been laid off, can’t provide Christmas gifts for my children and the lights would make them so happy.”

Fifty five people in an hour – fifty five people who can’t provide Christmas – too many children to count who won’t know the joy of finding gifts from Santa – fifty five families who just want some lights to put a smile on the faces of those children. It made me want to go out and buy lights for everyone who responded (which of course I can’t do).

What I can do is to remember these events and do whatever I can to brighten the holidays for someone else. And I urge you to do the same thing.

It can be something small and simple – take some food to a foodbank, drop some change in the Salvation Army kettle, visit a neighbor who spends most of their time alone, call an old friend, help out at a homeless shelter, befriend a child in a group home. But I challenge you all to do something.

Even when times are bleak, I believe we can find ways to help others. I would love to hear your stories of helping….

Today I am thankful for all that I have and that I am able to share what I have with others.

Thankful Thursday

Loucendia, a state employee like me and a participant on the same deafblind advisory council that I am on, awoke yesterday morning and prepared to report for work. Like me, she probably got herself ready, attended to her family – making lunches and breakfast – making sure everyone was good to go for the day – and then she made the drive to our downtown area. She parked in the newest of our state-owned parking decks, and began the walk to her office building, one building over from mine. The walk is one that hundreds of state employees make each day, but it is also one that requires crossing a very busy street in them middle of rush hour.

As Lou attempted to cross the street, a crossing marked by the flashing “WALK” sign as safe for a pedestrian, she was struck by a city transit bus and was killed.

The investigation is still continuing, and no answers have yet been given for this horrible tragedy. It weighs so very heavily on my mind and in my heart, and has made this Thankful Thursday post extremely significant for me.

Today, a day for which none of us have any promises, a day which could have started as inconsequential as Lou’s probably did yesterday, a day which could bring unheralded tragedy, is a day I am driven to give even stronger thanks than usual. And, as a direct result of the tragic end to Lou’s life, I have decided to take a different approach to giving thanks publicly on this blog.

I will not be posting Thankful Thursday after today. What I will be doing is making a statement at the end of every blog post that I write – a statement of thanks for whatever stirs in my heart at that moment. I have decided that giving thanks publicly should be a daily proclamation, and not confined to just one day a week.

Today, I am thankful…

• for the smile on Ashley’s face this morning when I woke her and she looked into my eyes


• that my adult son still comes into my bedroom each night and signs “I love you” before he goes to sleep


• that Jessica calls me every night, even if it just to tell me what she had for dinner


• that Corey is healthy and happy, and that his life is not the hell it was for the first 12 years of living


• for my brother and his beautiful daughter, Melody


• for my special friends – friends who are just a call or glance away – friends who understand me and still like me – friends like Lynnette, Amy, Jackie, Sharon, Mike and Don


• for people like Lou, people who choose to make a difference for children


• for the material blessings in my life – a home, three meals a day, healthcare, and a job that allows me to provide for my children


• and for the ability and rights that I enjoy, including writing this blog

Rest in peace, Lou.

"Gotta Love This State I Live In", she said sarcastically

I love living in the South. And I've always loved many of the things my home state has to offer. Then something like this comes along and sends my blood pressure off the charts...

Hopes For Group Home Dashed

A community service board in Northern Virginia dropped plans to set up a group home, pictured on the right, for adults with intellectual disabilities after neighbors complained vehemently to the local board of supervisors.

The Rappahannock-Rapidan Community Services Board (RRCSB) had proposed converting a foreclosed home in a rural neighborhood into a supervised group home for a handful of adults with developmental disabilities who had no criminal backgrounds.

Members of the neighborhood voiced concern that a group home would lead to decreased property values, compromised neighborhood safety, a violation of neighborhood covenants, lost insurance coverage, and safety problems for the residents with disabilities.

This newspaper editorial was excellent however.

I just cannot believe this cr*p happens. OK, yes I can, but I don't want to believe it.

Surfing - The Good and The Bad

While I surfed the web this weekend, I found two stories I wanted to share. One is very good news, and one if very bad news. First the good news:

From the HumanWare website - HumanWare, in partnership with the Washington State Office of Deaf and Hard of Hearing (ODHH), has developed a new deafblind communication system. The DeafBlind Communicator (DBC) is the result of collaboration between deafblind individuals and focus groups, professionals from both the deaf and blind communities, and HumanWare’s engineering and marketing teams. The basic DBC provides three types of communication for deafblind users: face-to-face, TTY, and SMS Texting.

Check out their website and find out more about this remarkable device that opens the door to the world a little wider for people who are deafblind.

Now the bad news:

Apparently the life of a child born addicted isn't worth much. The child's parents abused and neglected her after birth, resulting in the child's deafblindness, broken bones, and cerebral palsy. Although the parents were arrested and taken to court, the father received a 4 1/2 year sentence and the mother a 3 year sentence.

Read more about this horrible story here...I wish I could bring the little girl home with me.

So Tired of the Same Conversation

When Ashley first started school (age 2.5, 12 years ago), I told them she needed sign language support.

When they shut down all classrooms for children with hearing impairments and who sign (versus children with cochlear implants), I reiterated that Ashley needed sign language support.

When we began our path to due process in elementary school, I told them yet again that Ashley needed sign language support.

The consultant they hired to evaluate Ashley said she needed the support of a fluent signer. The consultant I hired to evaluate Ashley said she needed the support of a fluent signer.

When they hired a fluent signer to work with Ashley, the pay was so bad the signer left after one year. I told them they needed to find someone else.

When Ashley was transitioning to middle school, I told them it was even more important to have a fluent signer with her. At home, she was signing sentences, and I proved it to them by videotaping her.

For a while in middle school, they had a wonderful and fluent signer with Ashley. Ashley learned by leaps and bounds. Then, of course, they replaced that person with someone they are training in sign language.

Now, high school transition is looming, and the person being trained is still not signing anywhere near as much as Ashley.

The consultants the school district contracted to evaluate Ashley’s communication said during our meeting today that Ashley needs a fluent signer for the entire school day.

So, should I believe that this time the school district will listen and do what I have asked them to do every year for the last 12 years? Or do I just give up?

I must admit that there are many days when I just want to give up….

Barry Baker's Story Must Be Told

I am not doing a Thankful Thursday post today - for the first time in two years, I am setting aside the list of things for which I am thankful so I can tell you story of Barry Baker. It's a story that must be told...

Barry was a 59 year old man, a man with both intellectual and physical disabilities, but a man making a life for himself.

He lived alone, and like many of us, wasn’t the best housekeeper in the world. He was overweight, and after having two hip surgeries, he also walked with crutches.

But he worked. He had a job he went to each day and every Sunday he went to his favorite bar to relax.

On November 29th of this past year, Barry was at home alone and began experiencing chest pains. He knew what to do – he called 999 (the UK version of 911). The dispatcher immediately sent an ambulance and told Barry she would stay on the phone while he waited for the ambulance. But then Barry collapsed. The dispatcher stayed on the phone and listened – listened to hear the door open and the EMTs to arrive.

What she heard astonished and sickened her. The two EMTs came into Barry’s home, saw his messiness, his disability, and his weight. At that moment, they decided his life was not worth saving. So, they stood there and let him die, deciding to tell everyone that he was dead when they arrived.

The dispatcher heard it all. She immediately turned over the tape of the event to her supervisor. The police were called. The two men were arrested, and charged with “willfully neglecting to perform a duty in public office.” Not murder – neglecting to perform their job.

This story sickens me and scares me. We must share Barry’s story, and I am asking you all to do that. Let’s not let Barry Baker’s story end this way.

Here is a link to the newspaper story.

Can't We Do Better?

I attended a meeting this week at the day support facility for my oldest daughter, Jessica. Jessica is going to be 18 years old in just a couple of weeks, and after school and on school holidays she attends a program at one of our local facilities that specializes in day support for people with cognitive disabilities.

Jessica has been at this particular facility for six years, and prior to that, she spent 2 years at a similar program run by another disability-focused entity. If you do the math, you will see that she started in these programs when she was 10 years old, an age where most children of the same age are attending daycare facilities after school and during school holidays. However, because of Jessica’s aggressive tendencies, no traditional daycare facility would agree to accommodate her.

I’ve never cared for the day support programs, but as a working single parent, my options were limited. The first program Jessica attended was staffed by low-paid workers, most of whom had little to no experience in relating to people with cognitive disabilities. The facility itself was gloomy and dark, and the ‘clients’ (the name for the children who attended the program) would sit around doing little for most of the day. Homework help was nonexistent, and even though plans of care were developed for each child, they usually were not followed. The atmosphere was so depressing that I hated sending Jessica there each day. A depressing environment was definitely not what she needed.

After the first facility, Jessica moved to the only other program in our area, the one that she is currently attending. While the staff at the second program is slightly better trained, the feeling I get when walking in to the facility is not positive. The rooms are small and crowded, and the furnishings are old. The look is not what one would find in a mainstream daycare facility, but rather gives the impression that the people in charge think appearance will not matter to their ‘clients’.

Since all the ‘clients’ have significant cognitive issues, and many have significant behavior issues, I have to wonder how Jessica, and all the other children for that matter, will have positive behaviors and habits modeled. While observing during my meeting, I saw older teenaged clients being handed crayons for coloring. I saw those same clients throwing the crayons across the room. I saw Jessica trying to flirt with a boy about her same age, but her flirting led to inappropriate touching and language. The staff person merely pulled Jessica away from the boy. I saw a young man with Autism rocking back and forth and moaning. The staff person sat right next to him and did nothing. Then a young girl, probably about 13 or 14 years old, came running through the room, naked and touching herself. Many of the other clients laughed, and even one staff person laughed with them.

I have been searching for years for a program that will be a good match for Jessica, both now and in the future. So far, I have found nothing in my city. I realize that caring for and supporting children with significant challenges is not easy, but there has to be something better. Our service delivery systems are doing a rotten job, and I don’t know what to do to change it. Just today in the news, my state’s legislature announced it was going to look to cut social service programs to balance the budget. If that happens, the bad is going to get even worse, and our children and adults with cognitive disabilities will continue to have bleak futures.

Another Failure

On October 7th, I wrote about a young girl who had been failed by both the system and, in my opinion, her family. That same day, the following story of a mother, overwhelmed with the events of her life, took both the lives of her children and herself.

Suicide Haunts A Kentucky Family

This mother has also been failed by the system. One of her daughters was diagnosed with a rare disorder called cri du chat syndrome. Like many rare disorders, very little support is available at the local level - the level where parents are most likely to seek help.

There is a national support group, but again, what this mother needed, and what most of us raising children with disabilities need is local, available support. If you have support groups where you live, I urge you to attend and participate. If you don't have a support group, I urge you to contact a national organization and start one in your area.

We all need support - even those of us who think we don't feel overwhelmed.

The Failure is Not Hers

She was eight years old when I first met her, and I didn’t need anyone to tell me that she had a diagnosis of Autism. She never spoke. She wouldn’t look anyone in the eyes. She bounced a ball ALL THE TIME, stopping only for a few hours sleep each night.

Her parents were well to do, intelligent people, although there seemed to be a bit of a disconnect between them. Dad talked of helping his daughter bathe and dress. He talked about having to sit on her just to cut her nails. He talked about the food battles and what a struggle it was to get her to eat something healthy. Mom talked about the things Dad did, and about how much she needed respite from the daily grind of raising her daughter.

Then a few years passed before I saw the girl again. She was now in the 7th grade. She had become slightly aggressive and still she bounced the ball all the time. Then came 8th grade. The girl was even more aggressive. She hurt several people at school, some of the people even requiring medical intervention. She had begun to speak, but the words were parrot-speak – “Pack your sh*t and leave”, “Who the hell do you think you are?”, and “Just leave me alone.”

Freshman year in high school has arrived. The aggression is out of control. Sexual activities are initiated frequently and in extremely inappropriate places. Escape tendencies have flourished. The school district, at least in this instance, has very little choice. The girl must be moved to a much more restrictive school placement – unfortunately a place where she will learn more than academics. The parents, probably disconnected permanently at this point, refuse to intervene. They could make a difference. They could change the school district’s approach. But they, along with the rest of us who are powerless to intervene, will watch their daughter descend even deeper into a place lacking the supports she needs.

The system and the family have failed this girl. It breaks my heart.

Today I am Very Sad...

and at times like this, it's really hard to understand and accept that there is a master plan.

Four Children With Special Needs Die After Their Bus Crashes

The Girl In The Window

I wrote in my "I Do" post the other day:

Do you look at other children - foster children, homeless children, children not receiving what you think they deserve - and want deep down in your heart to take them all home with you? Do you feel utterly depressed that you can't make the world a better place for them?

Then, one of those strange coincidences happened that makes you wonder about the Controller of the Universe, and I ran across this article from TampaBay.com:

The Girl In The Window

I warn you that it is very long. You will probably cry as you read it. And if your spirit is not touched in a way it has never been touched, then I hope your path and mine never cross.