Falsely Accused?

I believe one of the biggest fears of parents of children with disabilities is being falsely accused of child abuse or sexual abuse of your child. This is an even bigger worry for parents of children who are non-verbal, or single parents raising children of the opposite sex.

Check out this story posted by Roy Ellis, a father to 11 children - A Dad's Nightmare Over False Sexual Abuse Charges.

I, too, have been accused of child abuse. My now 21 year old daughter honed the art of false accusations. Jessica was (and still is to a degree) a child who would erupt in outbursts of rage and aggression. Although she did frequently and seriously hurt others (she broke two of my ribs during one of her rages), she would hurt herself also. Because of her hemiplegia she has limited use of her left side and during her rages, she would lose her balance and fall. Many times she would go to school or daycare and tell the staff that I was the one who hurt her.

The feeling of having child protective services show up at your door is beyond words. I was fortunate because I had a large support group who could speak to what really happened, and most importantly, child protective services believed my support group and me. But many many parents are not believed.

What about you? Have you had this experience? Has someone put words into the mouth of your child, or witnessed something they didn't understand? Have you been accused and had to defend yourself? How have you survived this?

Pray for Robbie

ROBBIE WAS FOUND ALIVE FRIDAY AFTERNOON!! AFTER 6 DAYS, LITTLE ROBBIE WAS FOUND IN A QUARRY, CURLED IN THE FETAL POSITION, COLD AND DEHYDRATED, BUT ALIVE AND ALERT!!! HE WAS IMMEDIATELY AIRLIFTED TO THE HOSPITAL WHERE HE WAS REUNITED WITH HIS FAMILY!!

Robbie Wood is 9 years old and has a severe form of autism. He can't speak, and he likes to run and hide from his caregivers. Last Sunday afternoon the unspeakable happened. While on an outing with his father, his father's girlfriend, and his brother (who also happens to have autism), Robbie darted away. The outing was in a civil war battlefield park, a park that is 80 acres in size, and surrounded by a thousand more acres of dense forest, cliffs and a river.



As of the time this blog was written (Wednesday afternoon), Robbie still had not been found. County police, state police, professional search and rescue organizations and 1000's of volunteers have been combing the vast area looking for Robbie. Robbie was dressed only in a long sleeve teeshirt and athletic pants - clothes not warm enough for our 40 degree nights. And, he hasn't had any food or water since Sunday afternoon.

Everytime I think of what Robbie is going through, as well as what his parents, other relatives and friends are going through, tears flood my eyes. Each passing hour makes keeping grim thoughts out of hopeful hearts harder and harder. There have been vigils and prayer circles and volunteers who vow never to stop looking for Robbie until they find him and bring him home. But there have also been people who offer negative comments about Robbie's parents.

Comments like, "How can a father just let a son wander off?" and "What is wrong with these parents?" and "Robbie has scratches and bruises on his face in that picture? Did the parents do that to him?". And that's the milder of the negative comments and questions.

I know what it is like to raise a child with significant special needs. I understand the running and hiding. I have experienced first hand the self-injurious behaviors that to an untrained eye would point to a parent or caregiver. But the police have given absolutely no, as in a big fat NO, indication that this is anything other than Robbie has run away.

Why do people who have no clue about parenting a child with autism feel the need to ask questions and make comments that do nothing but hurt the family more? Honestly, it really, really pisses me off...

Please keep Robbie and his family in your prayers.

A Battle With The Dark

Being a parent to a child with significant disabilities is very difficult. But one of the most difficult things early on is wondering whether your child will live or die.

How many nights have you gotten up multiple times just to make sure your child is still breathing? How many times have you sat in a hospital room, clutching your child's hand and praying that they will stay with you at least a little while longer? How many times did you look into their innocent eyes and feel the tears pooling in yours because of fear, fear for their survival?

I've been there, and actually still go there from time to time, as I am sure many of you do. Each seizure, each illness, each pale face and dark circled eyes shakes loose the fear that we try to tuck neatly away in our hearts.

For me, Ashley has survived. She has done what all the doctors said she couldn't do - live. She has definitely had her serious illnesses and her brushes with death, but she has kicked that reality to the curb and is today a pretty healthy and definitely vibrant teenager.

And I find that my fears for her survival have shifted to fears for my survival, and the knowledge that I will one day have to leave her.

Ashley doesn't and probably never will understand the concept of death. If I even leave the house for an hour to go grocery shopping, she is signing and asking for me constantly. And, she will refuse to go to sleep unless I kiss her goodnight. What will she do when I can't give her those kisses anymore?

I know this is a very dark post, but that is where my mind has been recently. Rather than the fear of Ashley leaving me, I fear my leaving her.

There aren't many places a person with deafblindness and medical issues can go as an adult. There aren't many people who even understand her disability. And there are definitely not people who will provide loving care, or even appropriate care, for her.

Though she may not be able to label her feelings, she will feel total abandonment. She will not undestand and she will probably be angry. Those feelings will translate into behaviors that others will not understand and will not support. That lack of undestanding will cause people to make decisions about her that I know deep in my heart will not be good.

Just before I adopted her, her doctors wanted to institutionalize her. If that had happened, she would in no way resemble the person she is today. But does her future without me hold that same threat of institutionalization? If that comes to be, she will lose herself and her life will become my worst nightmare.

I don't have any answers. This post really has no point other than I needed a place to voice my fears lest they totally consume me. Enough for now....

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.

Not an Option...Yet

As parents of children with significant needs, we've learned to adjust to the lack of sleep, the endless hours lost from work due to doctor appointments and such, and the stares of people who don't understand. But there is one thing that I, and some of my friends, are finding hard to adjust to.

As we lift, roll, turn, and steady our children who are unable to do those things for themselves, we are wearing down our bodies. At first, it comes as a general ache, a dull pain that over the counter pain relievers can help. Then it becomes more severe, and our doctors prescribe muscle relaxers, prescription pain killers, and such. But what happens when those things no longer work?

That's where I am right now. That's where my friend, Lynnette, and several others are also.

I have carpal tunnel syndrome. Lynnette has a problem with her bicep tendon. Another friend has intense back pain. And all our doctors recommend surgery. But surgery is not an option.

My surgery for carpal tunnel can't be done arthroscopically. It would involve an incision from the middle of my palm to about 4 inches down my inner arm. It's my right hand. The hand that hooks up Ashley's G-tube for medication. The hand that draws the medication into syringes. The hand that helps feed her - wash her - dress her. A surgery that would put me out of commission just isn't an option.

The same goes for Lynnette. She, like me, is the sole caregiver for her daughter, Brooke. She is the one that feeds her through her G-tube - the one who changes her trach - the one who hooks her up to the ventilator at night - the one who lifts and turns and bathes and changes. Surgery is not an option.

Yes, I realize that we may get to a point where there is no other option but surgery, but we hope and pray that we don't get there. In the meantime, we live with the pain, knowing it won't go away but hoping it will.

The people who don't really 'get it' say isn't there someone who can help you? Well, if there are, we haven't found them. People come and go in our children's lives, but their committment is to a job - 8 hours a day and then a trip home. We're just lucky if they show up for the 8 hours (which they sometimes don't).

Family? - nope, not in my case or Lynnette's case. Hiring a nurse? - nope, already losing so much time from work that money for nursing care isn't there. I just don't know the answer.

I'm not looking for pity, and I know Lynnette and my other friends aren't either. We deal with enough pity already. But if you do have some emotion to spare, understanding would be good.

Just in pain - just sharing - just wanting a little understanding...

A Different Fear

Though I am afraid of many things – camel crickets, roller coasters, etc – I only remember feeling that deep, in-your-gut type of fear a few times in my life.

Staring down a store robber who was holding a gun pointed at my head. Living with an abuser whose switch flipping I could never predict. And September 11th, when I watched the horror unfold on a television at my place of work knowing my children were 10 miles away in school.

That fear on September 11th was worse than the gun-wielding robber or the fist-wielding spouse.

I wanted – no, I needed – my children with me that day. Thinking rationally, I know I couldn’t have done anything to keep them safe if the terror continued, but I wasn’t thinking rationally. I just wanted us all in the same place, all holding hands, all knowing our world had forever changed.

I sincerely hope that out of the horror that was September 11th a safer world has emerged. Even though we complain about TSA, backpack checks at theme parks, and a constant guard presence in our work places, I don’t mind those things if I can feel a little safer.

But today, one day after the killing of Osama Bin Laden, the little spark of fear is back in my chest. Will we see retribution? Will our security measures hold? Will it be worse before it is better?

I know that I will keep very close tabs on my children. I know that I will have a plan to bring us all together should another terror arise. No less today than 10 years ago I want my family together to ride out any storms.

And to quote one of my favorite bloggers, Sheri, “I am not celebrating. I am not mourning, but I am not celebrating.”

Sleeping Beauty

Ashley had yet another MRI under anesthesia last Friday. She was already having them twice a year to check the status of the three brain tumors she has, but this time, her neurosurgeon ordered an MRI of her spine to make sure no tumors were present on the brain stem or the cervical spine. Ashley has been experiencing some slight right-side weakness, and the neurosurgeon said he would rather be proactive about checking.

I agree with that approach, but still don't like it. The MRIs under anesthesia are incredibly difficult for her.

She knows what is going to happen as soon as we pull into the hospital parking lot. She tries really hard to be brave, but her anxiety kicks in after just a few minutes. It doesn't help that the MRI staff seem to move in super slow motion. The longer she sits, the worse the anxiety gets. But the time the staff is ready for her to get on the stretcher, she is in all out refusal mode.

We've tried a couple of things to try to make the process easier. One thing we have tried is giving her Versed via her G-tube. According to the manufacturer, "Midazolam is given to children before medical procedures or before anesthesia for surgery to cause drowsiness, relieve anxiety, and prevent any memory of the event. Midazolam is in a class of medications called benzodiazepines. It works by slowing activity in the brain to allow relaxation and sleep."

Sounds good, doesn't it? Well, it doesn't work all that well for Ashley. If it reduces her anxiety, I'm not seeing it. She still fights for all she is worth when it's time to move to the stretcher. Friday, it took two strong men and a nurse to get her in what appears to be a great wrestling hold, and then move her to the stretcher. Another nurse had the mask for anethesia on the ready, but Ashley still ripped it off her face and broke it. In addition, whenever we use the Versed, she is slow - really, really slow - to wake up after the procedure. And that scares me beyond words.

The other thing we have tried is Ketamine. According to Wikipedia, "Ketamine has a wide range of effects in humans, including analgesia, anesthesia, hallucinations, elevated blood pressure, and bronchodilation. Ketamine is primarily used for the induction and maintenance of general anesthesia, usually in combination with some sedative drug. Other uses include sedation in intensive care, analgesia (particularly in emergency medicine), and treatment of bronchospasm. It has been shown to be effective in treating depression in patients with bipolar disorder who have not responded to other anti-depressants."

Ketamine knocks Ashley out in less than 30 seconds, but the side effects frighten me.

I want there to be another solution...

Here are some photos from Friday (sorry for the poor quality. I was using my cell phone):

Ashley is waiting in a small room adjacent to the MRI room and watching TV while we wait...and wait...and wait. This is early on so she is not too upset yet.



Ashley is in the recovery room. This is exactly how she looked for 4 straight hours. See why I am so scared?



Even on the trip home, she is still half asleep. And, she stayed 'out of it' for the rest of the day and night.



Now we have to wait until Tuesday to see if the MRI revealed anything :(

Dear God, Ashley and I Need You

Tonight I am anxious and worried because tomorrow Ashley has an MRI under anesthesia. The MRI is being done to check the status of the three brain tumors that were identified two years ago.

When the tumors were first identified, Ashley had MRIs every 4-6 months. But, because they never seemed to be growing or changing, the neurosurgeon suggested going to one year intervals. This has been an extremely long year.

I've not noticed anything that would make me think the tumors were growing or doing anything different than they have the last two years. Both her neurosurgeon and neurologist do not feel the tumors are the source of Ashley's seizures. But still...there are things in my baby's brain that shouldn't be there.

I probably won't get a status report from the MRI until we see the doctor in two weeks (unless, of course, the person who reads the MRI thinks otherwise). No news will be good new, right??

Please keep my sweet daughter in your prayers tomorrow. General anesthesia scares me. Brain tumors scare me. My fears will not subside until I have her home with me tomorrow afternoon.

Breathe, Just Breathe

I felt like someone had punched me in the gut. It was one of those stop breathing moments - two seconds until telling myself to breathe again.

I knew when I adopted Ronnie that he had a lot of medical issues. Among those issues is kidney disease. He takes a handful of medications three times a day which supplement the job that his kidneys should be doing for his body. I had even heard from his foster mother that his last visit with the nephrologist in their town went well - that Ronnie was improving and probably would continue to improve.

Yet on Wednesday, the nephrologist here in my town - a highly respected and very experienced man - said that Ronnie was holding his own, but that medicine was not going to be a lifetime solution. He said that the future held dialysis and/or a kidney transplant.

Ronnie's world and mine took on a whole new dimension with those words. We've got to continue to work hard to keep him healthy, to do everything all the doctor's tell us, to be aggressive with treatment options, and through it all and most importantly, we've got to keep positive attitudes.

But I'm putting you all on notice right now, if my beautiful boy needs a kidney transplant, I will be asking each and every one of you to consider donating.

Child Sent Back To Russia

I’m sure most of you have heard the news story this weekend about the adoptive mother who put her 7 year old son on a plane and sent him back to Russia. Both the United States and Russia are in an uproar over the event, and Russia may even suspend any future adoptions by the US. The adoptive mom said a lawyer she met via the Internet told her she should send her son back.

According to the mom, the child was very violent and she was scared of him. She said he attacked her several times, and that she caught him trying to start a fire in his bedroom. While these accounts may sound far-fetched to most, I understand exactly what was happening. I believe the boy suffered from Reactive Attachment Disorder.

My daughter, Jessica, is diagnosed with Reactive Attachment Disorder. The story told by the mother of the young boy sounds eerily familiar.

I have had several friends who either wanted to or actually did adopt children from Russia. The children were all in orphanages. My friends believed that all the children available in the US had serious emotional issues. The believed that they could get a young child from Russia, a young child of their dreams. Unfortunately, my friends have realized that the children from Russian orphanages have not escaped emotional upheaval either.

Reactive Attachment Disorder is in my opinion one of the most difficult issues a family can face. Like the boy in the story, people outside the family may not see the issues. RAD children are very good at covering up and presenting a charming face to people outside the family. But for the family, rage, aggression, injury, false accusations, killing animals, starting fires, etc. are a daily occurrence.

I in no way condone what the mother did. But I do know that the young boy needs some immediate and serious help. I hope he gets that before another unsuspecting family ‘rescues’ him. The mother and the rest of the family also need immediate and serious help. If anyone is at fault in this situation it is the ‘system’.

Potential adoptive parents need to be brutally educated. They have to know how damaged many of the children in our foster care system and in the institutions of other countries can be. It doesn’t mean these children should not be adopted. Rather when they are adopted, everyone in the family needs constant support.

Jessica is proof that a child diagnosed with RAD can mature and lead a good life. But, the issues are always there. Jessica has learned to recognize times of difficulty and to ask for help. Those around her have also learned to diffuse potential triggers for her negative behaviors. I’m proud of her for all she has and is accomplishing, but she could not have done it without intensive supports from the very beginning of her time with us.

I just hope that people who do not know about Reactive Attachment Disorder will not judge either the child or the mother. Just understand that desperate people do desperate things. We, as a society, need to offer assistance before the desperate acts happen.

How Did That Happen?

What do you do if your child comes home from school with bruises, scrapes or other injuries that they didn’t have when they left for school?

When my son without disabilities was in elementary, middle and high school, I would just ask him if he came home with injuries – and he would tell me what had happened.

But for my children with disabilities, it’s a different story.

Jessica, for instance, can relate a story, but often that is just all it is. It’s difficult for her to remember what happened an hour before my asking, much less earlier in the school day. And, if someone at school or on the bus tells her to stop being a baby, or that the injury is not a big deal, she will say nothing at all.

I also have a tough time getting an answer from Ashley. She’s so used to bruises from running into things, that I don’t think she thinks twice about it. But very often the bruises I see at the end of the school day are obviously not from running into things. And then there are the scrapes and sometimes even cuts that I never get a call or note about.

So what do you do if that happens to your child who can’t tell you what happened? Do you send a note to school the next day asking for an explanation? And what if no one owns up? If your child is supposed to have an aide by their side all day in school, do you accept the answer that no one knows how the injury happened? What recourse do we parents have?

My Heart and Yours

Yesterday Ashley and I were at our local Children’s Hospital for her semi-annual dental checkup. Not surprisingly, since it is commonplace at the hospital, we had to wait quite a while. Ashley was content to look through magazines, and I sat and ‘people-watched.’

A young woman, probably about 19 years old, sat not far away. She had a trach and severe CP. Her wheelchair was a mechanical marvel but she never moved. Every so often her mother would need to suction her, but when she wasn’t suctioning, her mother played with her daughter’s hair – twirling it, running it between her fingers, braiding it. All the while, she gazed lovingly into her daughter’s eyes.

In the seats behind us sat a young mother cradling her severely disabled baby in her arms. She rocked back and forth in the ‘baby dance’ all mothers are instinctively bred to do. As she rocked, she stroked her baby’s cheek with two fingers of her right hand.

An older gentleman walked toward those of us who waited. He was holding the hand of a young girl whose left arm was bent strangely and appeared to be of little use to her. She struggled to walk but the determination in her eyes said she would not give up. The man and the girl sat down, and the man’s hand drew circles on the girl’s back. She looked up at him and he looked back smiling, never stopping the stroking of her back.

The whole time I was watching, I had my hand on Ashley’s arm. I was very gently stroking her arm, almost oblivious to the fact that I was doing it. Every so often, I would weave my fingers into hers, and she and I would exchange a smile.

It seems we parents of children with severe disabilities must always be touching our children, almost as if we fear they will slip away if we don’t. The connection binds us together, and holds the unthinkable at bay. It is especially strong for those of us whose children have almost slipped away. Something deep inside, some primal urge to protect, keeps our children’s heartbeats, the warmth of their skin, and the rhythm of their breathing alive on the tips of our fingers.

There is no better feeling in the world.

They Came, They Talked - Did Anyone Listen?

Hundreds of people showed up, some as early as 4am on a morning where the temperature was only 13 degrees. At 8am, they started getting the numbers that would indicate the order in which they could share their stories. By noon, the start time of the hearing, even the term standing room only couldn’t describe the crowd.

Monday, January 11th, was the day that the Virginia General Assembly said they would listen to the concerns of those opposed to balancing the state’s budget by cutting services to people with disabilities. The hearing started promptly at noon, and based on the number of people scheduled to give three minute testimonies, the hearing was going to last well into the night. I got number 168, and just by doing the math, that meant around 8pm.

There were parents – and caregivers – and service providers – and doctors – and teachers – and preachers. Brothers, sisters, parents, and friends. There were people with disabilities – people in wheelchairs, people with braces supporting their bodies, people with white canes, and people who could only get three sentences out in their allotted three minute speaking time. All shared the same message – please do not make the lives of people whose lives are already difficult any worse.

They begged to keep respite hours. They cried as they talked of their family members who were aggressive. They voices became a whisper of worry when talking about what would happen to their most fragile of loves. They were defiant and proud and it was obvious that they were also uncomfortable having to beg to keep their lives afloat.

Did it make a difference? We won’t know for a couple of months, but given the dire straits of the budget situation, I don’t have much hope. I do hope that the assembly members listened and really heard the stories today. If a difference can’t be made immediately, maybe it can be made in the future.

And to a person, the most important statement everyone shared was – we do not need another institution….please divert those funds to the community supports that will keep people with disabilities with their friends and their families.

Please keep Virginia, its people with disabilities, their friends and families, and the General Assembly members who hold fate in their hands in your prayers.

Balancing On The Backs of The Weakest

My home state, Virginia, has a rotten record of providing services to people with disabilities. Virginia is consistently ranked between 40th and 47th out of 50 (states) on services. So, I shouldn’t be surprised by the latest state budget recommendations. But I am. I didn’t think things could get a lot worse, but I was wrong.

I understand that state budgets have been hit hard during this economic downturn. I’m a state employee and I’ve seen the cutbacks, the extra jobs we all have to take on, and the layoffs. Virginia is required by its constitution to have a balanced budget, i.e. the state cannot act like the Federal government and just go deeper and deeper into debt. So as we approach this next budget cycle, the cuts which in the past have been deep, are going right to the bone. Unfortunately, the proposals will hit people with disabilities the hardest.

Here are some examples of the proposals:

• Eliminate 200 Mental Retardation waiver slots


• Reduce the number of hours allowed for respite care from 720 annually to 240 annually


• Postpone mandated increases in annual waiver slots


• Freeze enrollment in the 5 waivers


• Reduce provider rates for waiver services by 5%


• Reduce rates and prior authorization for intensive in-home services


• Limit annual visits for physical, occupational and speech therapies.

Currently in Virginia, 5,115 individuals are waiting on the Mental Retardation Waiting List. Ashley has been waiting 5 years on the Developmental Disabilities list, and she is still in spot 329. The waiting lists will continue to grow and people who need services to become productive members of society will languish in sub-standard care. The providers, usually personal care aides, are already paid an extremely low rate. That is why families have a hard time finding and keeping good aides. And respite – let me tell you how I use my respite:

720 hours a year works out to about 13 hours a weekend, which is the way I have chosen to use mine. 2-3 hours each weekend is spent grocery shopping. Another hour is spent waiting at the pharmacy. Car maintenance consumes another 3 hours (the total for the year divided by the number of weekends). Home and yard maintenance takes another 2 hours. Then there are the errands for my other children – haircuts, school shopping tasks, clothes shopping, etc). Those will take another 2 hours. Then, because I am a state employee and our resources have been cut so drastically, I always have at least 50 hours of work to accomplish in a 40 hour work week. On the weekends, I use my respite time to do some of my work. – about another 2 hours. And, if there is anytime at all left, I treat myself to a few minutes at Starbucks.

I can make it work with 13 hours a weekend of respite. I absolutely cannot make it work if those hours are reduced to 5 for the weekend.

But here’s the icing on the cake. At the same time as this proposed dismantling of community-based supports, the current administration is continuing plans to rebuild a NEW, 75-bed, state-operated institution in Chesapeake, VA.

This all makes me sick to my stomach. Virginia's state motto is "Virginia is for Lovers." I would suggest we add "except for people with disabilities" to the end of that statement.

A Bleak Future?

I’m really starting to worry about my 17 year old son, Corey. If you’ve been a long time reader of my blog, you probably know a little about Corey, but if not, I’ll summarize.

Corey spent the first 8 years of his life living on the streets of Baltimore with his prostitute, alcoholic, drug addicted birth mother. Then, from ages 10-14, he was reluctantly rescued by his grandparents who took him to live in their Florida retirement community. After years of searching for another home for him (apparently his aunt and uncle, who live less than 5 miles from me, weren’t interested), I was approached and agreed to let him join my family. I first introduced my readers to Corey back in 2007.

Corey is diagnosed with depression, ADHD, and Asperger’s Syndrome. While his depression and ADHD are well controlled with medication, it’s the Asperger’s that has me worried for his future.

Corey has said he wants to join the military. I don’t think they will take him. His social skills are those of an 8-10 year old, and holding down a job isn’t something I believe will come easily for him. His grades in school are not good, and college, even community college, seems well out of reach.

So what will happen next year when he graduates from college? And what will happen with the rest of his life?

Even in a loving home, a home that balances limits with a chance to grow, he hasn’t grown. He is still a 10 year old ball of emotions with the cognitive ability of maybe a 9th grader, and the hormones of a grown man. How can all that be packaged into an employable person, a person who can provide for himself in the not too distant future?

I welcome any advice and suggestions any of you may have. Heck, I may even be willing to pay for them!

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.

Hope For The Future

The belief in the inner beauty of each and every human being is at the heart of L’Arche…and at the heart of being human… We do not discover who we are, we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.

-Jean Vanier, Becoming Human



I believe my biggest fear in life is what is going to happen after my death – happen to Ashley.

Ashley has made great strides in her short life. Doctors said she wouldn’t live – then said she wouldn’t walk – then said she would never communicate. From infancy, they recommended institutionalization. As my regular readers know, those doctors were very, very wrong. But, Ashley will need support throughout her life.

Just as Helen Keller needed assistance, so will Ashley. So, my challenge is figuring out how to ensure that assistance even after I am no longer able to provide it myself.

My experience with run-of-the-mill group homes is not good. Even under the best of situations, I don’t know of any group homes that are equipped or knowledgeable enough to support a person with deafblindness. My oldest son has tossed around the idea of establishing a group home, a group home done right, when he graduates from college. But that idea is mingled with a lot of other dreams he has, so I can’t count on that happening. And, I often feel that it is selfish of me to expect him to continue to care for his sister after I am gone. I know without a doubt that no one could care for her better, and I do pray that even if he chooses not to be her lifelong caregiver that he will at least stay very close to her.

I was offered a glimmer of hope last week when I read an article about L’Arche, a group that enables people with and without disabilities to share their lives in communities of faith and friendship. I’ve visited their website and like what I see there. I plan to explore this option a lot more, but I’m interested if any of you know of or have heard anything about L’Arche.

I know Ashley is just 14 years old, but the time to start planning for the future is now, not later, in my humble opinion.

Paranoid Momma

I had to take Ashley to the doctor yesterday. I didn’t know if she had the flu or something else, but she definitely needed to be seen. In fact, I probably should have taken her a day or two sooner, but I have an all-consuming fear of doctor’s offices and sick people this year.



I’m sure it’s the H1N1 virus and all the media attention it is garnering. And now the President has declared a state of emergency over the flu. How can a mother not obsess?

Ashley and I both had the seasonal flu last year. She and I both had the seasonal flu shots – like we do every single year – but we still contracted the virus. We both also took Tamiflu, and while it may have lessened the symptoms and duration of the flu, we were still both in bed for a week – not just sitting around feeling miserable – in bed.

I was administering round-the-clock nebulizer treatments to Ashley. She had stopped eating so we had to go back to pushing fluids through her G-tube, and I had to sleep in her room each night just to make sure I heard her still breathing. It was a miserable time and I absolutely do not want to go there again.

This year, however, protection against H1N1 is little more out of my control. Sure, I can insist everyone wash their hands and use hand sanitizer frequently. I can tell them to cough and sneeze into their elbow, and suggest they stay away from obviously sick people. But I can’t get us the H1N1 vaccination. There just isn’t enough to go around.

Why is that? Government agencies have been talking about pandemic flu for a long time. My agency, in fact, has had a pandemic flu plan in place for two years. We knew last Spring that H1N1 was here and would be getting worse. Why didn’t we do something to ensure enough vaccine? I haven’t heard any good answers to that question yet. Have you?

Oh, and for the record, Ashley did not have the flu yesterday. Her test came back negative. She does, however, have a sinus infection, and as far as I know, there are no vaccines for that yet!

Today I am thankful that I was able to borrow another computer. Ashley, you see, doesn't have the H1N1 virus, but apparently my computer does!

Diner Part Deux

Last October, I wrote about an unexpected and wonderful experience my children and I had while having lunch at one of our favorite restaurants. Well, it seems this particular restaurant is chock full of ‘experiences’ for us because something else happened this past Saturday.

We decided to have lunch at the River City Diner again. It was quite crowded but the server was agreeable to seating us in a quiet location away from the hustle and bustle of the lunch crowd. Ashley, understandably, does much better with meals when we keep the stimulation and distractions to a minimum, especially on this particular Saturday because she wasn’t feeling her best.

As the server approached our table to take our orders, Ashley hit the side of her head with her hand. It’s something she does when she is distressed, and although it doesn’t happen often, when it does happen it can be quite disconcerting. The server stopped in her tracks, a few yards from our table, and had a look of shock and horror on her face. She recovered quickly though, and came to the table to take our drink orders.

When the server returned with our drinks and to take our food orders, she immediately apologized for her earlier actions. She said that she had a nephew with Autism, and that she should have behaved better. She convinced me that she understood such behaviors, and she seemed genuinely contrite. I told her I appreciated her apology, and then just gave her our orders.

She was quite an attentive server, a young mother she told us, and a very typical diner sort of waitress. While the reaction initially annoyed me, the result, I believe, was positive. And, I’m hoping that some of the other customers seated nearby also were aware of the exchange, and perhaps had their minds opened a bit also.

What do you think? What would your reaction have been, and would you have handled things differently? I’m really interested in your comments, because as parents of children with special needs know, this sort of situation is common.

Off To A Good Start?

**WARNING**
You may not want to read this post immediately before or after a meal.
Those of you who are long time readers of my blog know how I hate camel crickets. For new readers, check here for what I really think about what I affectionately call the devil’s spawn.


Well, this morning when I went to dump dog food into my dog’s dish on the back patio, there was one of the wretched little creatures sitting right in the middle of the bowl. The evil angel on my shoulder took control and told me to dump the dog food on the cricket and maybe the dog would just eat it. I *loved* that idea, and it was exactly what I did.

I then woke Rocky dog up, sent him outside for breakfast, and watched while he gulped both his food and the cricket! I was congratulating myself – score one for me! Until…

Rocky dog came back into the house and while I was eating my Frosted MiniWheats, he decided to throw up. Being the mom of several children with special needs, vomit, even from a dog, doesn’t usually bother me. What bothered me was that the cricket came back up also – AND IT WAS STILL ALIVE!

So now I not only had this creature from hell in my house, it was covered in dog vomit and hopping all around.

I did the only rational thing I could think of - got out my trusty Dyson vacuum cleaner and sucked the little booger up. Now I will just have to convince one of my sons to take the vacuum container far far away and dump it. And I just hope I don’t have to hear the cricket jumping all around inside the Dyson.

So, how did your Friday morning start?