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.

"We're Going To Be Friends"

I've published videos before from D-PAN, the Deaf Professional Arts Network, and here is their newest one. I love it, and thought you might enjoy a positive end to your work week also!

The House That Stephen (re)Built

As a homeowner, it’s really difficult sometimes to know who to trust when it comes to repair people. And, it’s even more difficult as a single parent. We hear so many stories of unscrupulous contractors, electricians, roofers, etc., and then when you need one of those people, you worry about making a wrong decision. Even checking places such as the Better Business Bureau doesn’t always allay the fears.



But several years ago, I made a decision about a general contractor that was a very good decision. It wasn’t based on anything more than a gut feel – a sense that this person was honest, caring and good.

I had finally won my case to get Medicaid to pay for bathroom modifications for Ashley. Since this was a Medicaid funded remodel, I had to use a Medicaid registered provider. I got a list from the Medicaid website, and started making phone calls. One of those calls was different than all the rest.

Stephen Curtin, of Curtin Brothers Contracting, took my bathroom remodel job and in the process became a friend.

Stephen’s work is impeccable. He understands the inconvenience to a family that accompanies a major remodel, and he does his best to minimize that disruption. He kept me informed every step of the way, and involved me in all decisions. The end result – an accessible bathroom for Ashley – was beautiful. That was three years ago.

Since then, Stephen has built me a wheelchair ramp, modified the railings on my front porch to accommodate Ashley, remodeled a second bathroom, and replaced my attic steps. So, who was the first person I called when I realized I had a water problem in my kitchen? Stephen, of course.

Stephen is trying to move away from the home remodel business and start his own cabinet making company. But he didn’t tell me no, that he couldn’t help with the kitchen. In fact, he called and agreed to begin work the very next day. He brought his friend, Ross, a plumber, and together they have resolved my water damage and plumbing problems in the kitchen – all in two days. (Just for a point of reference, a contractor recommended by my insurance company estimated three times the cost and 4 times the length of time to correct the problem.

I know the quality of Stephen’s work. I feel his commitment to his customers, and I feel a deep comfort with his level of professionalism. I was very blessed three years ago when I pulled his name off a list, and the blessings have been multiplied many times since then. My house truly is the house that Stephen (re)built!

Thank you, Stephen. Thanks also to your lovely wife, GiGi, for being a partner in all you have done for my family. Thanks to Ross whose commitment and professionalism mirror yours. You are both fine men, excellent craftsmen, and people I hope to call my friends for a long, long time.

It Is Indeed Sherific!

Most days I don’t think about all that is involved in caring for my children with significant disabilities. I just do what needs to be done. Most days, everything gets done that should get done, and then we move on to the next day. But if it doesn’t all get done, I can get pretty stressed and feel like a not-so-good mother.

But I read something this week from Sheri, one of my favorite bloggers which helped me understand my feelings a little better.

On her blog, Ain’t That Sherific, Sheri was asked some questions from a new mother of a child with FAS (Fetal Alcohol Syndrome), and during the course of answering those questions, Sheri, also an adoptive mother, realized that as parents we are just as traumatized as our children with significant needs have been traumatized. It doesn’t matter that we weren’t around when the trauma was occurring. It moved into the family the same day our children did.

Intellectually I realize that, but I know that emotionally I have not accepted it.

One of the final paragraphs in Sheri’s post really hit home with me. She wrote, “We can advocate for our kids. We can fight for services. We can beg and plead for help. When it comes down to it, we are left alone to deal with the aftermath of the trauma they suffered as children. We can make it better, but it will never ever go away. My child's brain damage caused by alcohol in utero will not repair itself. We have to cut them some slack. Why shouldn't we cut ourselves the same slack?”

She’s right – we parents do need to cut ourselves slack. We need to realize that we do the absolute best we can, and we usually do it better than anyone else ever could. And even if we don’t, we keep trying.

Sheri, you have been an inspiration to me since I first ‘met’ you, and you continue today. Thank you for helping me see what is right in front of me.

His Brother and Sister

Ronnie's siblings visited this past Saturday. They are 10 year old twins - a boy and a girl - and they are absolutely beautiful children. Thier adoptive family was on the way to an Orlando vacation and agreed to stop by.

Ronnie had not seen his siblings for quite a while, and we just last week got the Skype session going so he could see them on the computer. That left a lot to be desired, so I was ecstatic that a visit was arranged.

As soon as they came in, they flanked Ronnie on the couch, so close to him that it seemed they were super-glued together. They don't know sign language but their eyes and their lips said how much they had missed him and how glad they were to see him. It didn't take long before they were all checking out Ronnie's bedroom and the other areas that make up Ronnie's new home. Ronnie's brother even came out and whispered in his adoptive mother's ear, "Ronnie likes the Redskins just like me!"

Their family could only stay a short while. They were facing a 16 hour drive to Florida, and it was already almost 4pm in the afternoon. There were many hugs and kisses, and promises to visit again soon. I hope those promises are kept.

I know that there were many reasons why Ronnie and his siblings couldn't be placed in the same adoptive home, but my heart was sad to see the joy, the closeness of the moments ending as everyone walked out the door. Ronnie has not seemed overly upset about the separation - perhaps he is used to it. But, I sure do wish all three of them could have been a part of our family.

I will, however, do everything I can to ensure that they are a part of our extended family. Thank you, Nadine, for the visit and the chanced to meet the siblings and the rest of your lovely family!

The Reality of the Time

I’ve recently been addicted to a cable TV show called Mad Men. It’s new season will start mid-Summer, so I have been making my way through all the previous seasons on Blu-ray. Here’s what the Mad Men website has to say about the show:



Set in 1960s New York, the sexy, stylized and provocative AMC drama Mad Men follows the lives of the ruthlessly competitive men and women of Madison Avenue advertising, an ego-driven world where key players make an art of the sell. The latest season of the show takes place in 1963.

The Premise: The series revolves around the conflicted world of Don Draper (Hamm), the biggest ad man (and ladies man) in the business, and his colleagues at the Sterling Cooper Advertising Agency. As Don makes the plays in the boardroom and the bedroom, he struggles to stay a step ahead of the rapidly changing times and the young executives nipping at his heels. The series also depicts authentically the roles of men and women in this era while exploring the true human nature beneath the guise of 1960s traditional family values.

It was that part about “1960’s traditional family values” that first interested me. Think Leave it to Beaver or Ozzie and Harriet…what I didn’t see in the show, however, was anyone with a disability. And I very clearly remember that about the late 60’s when I was growing up.

There was never a student with a disability in any of my classes at school. I never saw people with disabilities in the community or in church. Where I did see two young men with disabilities was in the home of one of my parent’s friends.

Mr. Lamden was a pharmacist and his wife was a stay-at-home wife and mother. Their two sons, both teens at the time, and both with severe cerebral palsy, lived one neighborhood over from us. While I would sometimes see Mr. Lamden at the drugstore, I never saw Mrs. Lamden or her two sons unless we visited their home.

I so clearly remember how excited the boys were to have young visitors like my brother and me. Their smiles would explode as soon as we walked into the room, and though they couldn’t speak, the sounds they made were obviously (at least to me) happy sounds. We entertained each other just by existing in the same room together, and I could read the disappointment on their faces when it was time for my family to leave.

I remember wondering, even though I was young, why the boys didn’t go to school – why their parents didn’t take them to the park or the beach. I wondered what they did to pass the day, and if they were happy and content with their lives. I imagined that they wanted more but didn’t know how to tell their parents.

I believe that those two Lamden sons were the reason my heart for advocacy was born. Even though my world is now filled with people of all abilities, I long to know what ever happened to the Lamden boys, and I so wish I could tell them ‘Thank you’.

Denise Comes Home

I brought Denise home yesterday. She is 10 years old and is quite the character. I think she will fit into this family very well!
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No, I didn't adopt another child. Denise is our new (used) van!

Back in March I wrote about the wonderful deal I was getting on a used van. The Tate family, truly special people, made it possible for me to have a van for transporting Ronnie. I've named the van Denise after my social worker. Denise - the social worker not the van - was instrumental in getting our local newspaper to do a story on Ronnie's homecoming, and that is what precipitated the offer of Denise - the van not the social worker.

So, say hello to Denise the van:

Goodness Personified

So many times in my life, when I have been stressed or down in the dumps, something always seems to happen to reinforce my belief in the goodness of people. Today was no exception.

As I’ve talked about before, the main obstacle to my adoption of Johnny was getting a wheelchair accessible van. I’ve struggled for many weeks now trying to figure out how I was going to afford an exorbitantly priced vehicle, but a vehicle I believed I needed to have. Yes, most accessible vans can be financed for 10 years. But the thought of paying about $600 a month for the next ten years appalls me.

I believe I have worked out a solution, a solution that doesn’t involve purchasing a van. But the person who contacted me today didn’t know that. Her actions and desire to help me touched my heart and truly did affirm that deep inside most people is a heart of gold.

Linda is a person for whom I have designed and managed web pages for almost 10 years now. Interestingly, she and I have never met and never spoken. All our communication has been through email. One day last week, she indicated in one of her emails that she was late getting me some information for a web site because she was having a bad day. I empathized with her because I too was having a pretty rotten day. She told me her story and I told her mine – again, all through email.

I’m not going to share her story but mine you’ve already heard, and it was about my feelings of despair because I couldn’t figure out a transportation solution for bringing Johnny home. We bonded over our moments of unhappiness and I believe both of us felt a little better just for having shared our stories. That was that…or so I thought.

Today when I arrived at work, I had an email from Linda. She asked me to call her if I could. I was quite surprised but immediately picked up the phone. She told me about visiting her mother in West Virginia over the weekend, and learning that a family that attended the same church as her mother had lost a child the previous week. The child was 12 years old and had, in Linda’s words, severe handicaps.

Linda then went on to tell me that the family wanted to honor their son’s memory by sharing all his specialized equipment with other families who had similar children. And Linda immediately thought of me and my need of a van. She called to tell me this morning that the van was available if I wanted it.

Linda didn’t know that I had already made other transportation arrangements, but I was so very touched that this person to whom I had never spoken and still have not ever met, would do something like this for me. That is the beauty of human goodness, and when it touches my life, I feel like I am bathed in a shining, warm, golden light.

I have been blessed in my life to have crossed paths with some very special people. Linda and the mother who has lost her dear son have now been added to that list, and I hope they know just how much brighter my life is for having met them. That mother has indeed honored her son's memory. And all the people with whom she shares her son's equipment will always know that.

And Linda, thank you, thank you so very much for caring.

Easier Because of You

I’m a glass half full person, but that has not always been the case. I mentioned a while back on my blog that I used to be a police officer. For 5 years I worked in the worst areas of my city and witnessed things no one should see. One of the many things that broke my heart were the children that had been abused by their parents. But that was just one of the many horrors that I saw every week as an officer.

Living that day in and day out began to turn me into a very cynical person, and I really did not like the person I was becoming. It was that reason I decided police work was not for me. And ever since then I have made the commitment to myself to have a more positive outlook on life.

It’s not always easy. I am not a Pollyana/Stepford person who turns a blind eye to the suffering in the world, the negative situations that all of us face at times. Stories of child or elder abuse still disgust me – natural disasters and the effects they have on hundreds of thousands of people make me want to jump a plane to go help - news of the poor economy worries me greatly – and the increasing violence in the world scares me more than I can say.

But with maturity I have learned to balance the bad news with the good that exists in the world. And while I don’t ignore that which is negative, I have made a conscious decision to live and project a more positive life. To accomplish that, often I must distance myself from people who have chosen a more negative approach to life.

I continue to surround myself with other glass half full people, people whose approach to life mirrors mine. I had a difficult time finding people like that until I became the parent of a child with a disability.

With a very few exceptions, I have found that parents of children with disabilities approach life with smiles not frowns. These are people who have every right to be negative, but they too have chosen to walk a positive path. I don’t know why this seems to be true. Maybe we feel we need to be positive to balance all the negative comments and low expectations we fear our children will face. Or maybe we realize that we can’t navigate this world of disability alone and we choose community over isolation. Whatever the reason, I want you all to know that you lift me up – you provide the inspiration I need to continue when life gets difficult – you link your arms in mine when I stand on the cliff of despair.

So thank you Lynnette, Jane, Jackie, Bradford, Heike, Emily, Carl and Elaine. Thank you Mommy Dearest, Attila, Marla, Mama Edge, Corrie, and Azaera. Thank you Mike and Dawn, Terri, MMC and Terena. Thank you Queenbuv3, and thank you everyone that I missed.

You make being a glass half full person much much easier!

Merry Christmas To All

Today starts our 'unplugged' holiday, but before leaving for a week, I wanted to wish everyone a very Merry Christmas. I hope your holidays are full of joy and love. My year has been enriched greatly by each and every one of you!

Sharing Our Dreams

This past weekend was the third annual Dreamcatcher’s Holiday Party. Dreamcatchers is a statewide support group, established many years ago in Virginia and made up of families whose lives have been touched by deafblindness. Those of us who have been with the group for many years have watched our children grow and flourish, and we are now watching a whole new group of young children and their families as they travel the path of deafblindness.

We are a non-profit organization, but one which does not generate many funds. In fact, if it were not for the generosity of our state’s Board for the Blind and Vision Impaired, we would have no funds. But even without money, I believe we would still come together periodically because the coming together is so very important to us all.

We have been there for each other during the grief that often accompanies the diagnosis of deafblindness. We have felt the strength of the parents that have come before us, and we all continue to grow into the parents that our children need us to be.

We laugh together – we plan the educational strategies for our children together – we celebrate the successes and learn from the failures – we provide emotional support in difficult times – and we are even there sharing the heart wrenching tragedy of losing one of our children.

We continue to exist on a wing and a prayer but because we have all seen the power of that prayer, I strongly believe our organization will always go forward.

Thank you to all the parents who joined us this past Saturday. Thank you for braving the cold weather – for setting aside your busy schedules for a day – for traveling many miles for some food and some camaraderie – and for sharing your beautiful children. And a special thank you to the lovely ladies of the Virginia Deafblind Project for joining us!

I hope you all have a wonderful holiday season!

Today I am thankful for the warm feeling of connectedness that comes with sharing our dreams for the future.

Happy Thanksgiving

Happy Thanksgiving, everyone! Today I am thankful for many things, including all the friends I have made here in blogland.

I've never met most of you in person, but I feel like we are neighbors who get together each day for coffee and a chat.

This technology which allows us to make friends far and wide, friends that in the past we would never have crossed paths with, is so important to me. You are all a source of support and inspiration, and I can't imagine my life without you all.

Enjoy your families, your feasts, or anything else that makes this day special for you. And if any of you want to share a slice of pumpkin pie, come on by :)

Coming Home

Because of my school district's lackluster performance at including students with disabilities in extracurricular and general education activities, I had pretty much given up on Ashley ever participating in school dances, PTA performances, or school clubs. In fact, the first and last time I did request that Ashley participate was way back in 2004, and it was a total disaster. That story of Ashley's token acceptance into a holiday school performance was what inspired Jonathan Mooney, author of Short Bus Stories - A Journey Beyond Normal, to include Ashley's story in his book.

So here we are many years later, and maybe, just maybe things are different.

Last Friday was Homecoming at Ashley's high school. There was to be a parade before the football game, and Ashley, along with the Circle of Friends club, was invited to participate in the parade. I agreed that Ash could participate, but deep in the pit of my stomach was a worry that once again tokenism would reign over inclusion.

I was wrong.

Ashley was welcomed - her Circle of Friends regular education students included her just as everyone else - disabled or not - was included - and Ashley had a absolute blast!

She showed up in her wheelchair decorated with ribbons in the school colors. She wore clothes in the school colors, and her smile rivaled even the cheerleader's smiles.

She lined up with the other students. She 'listened' to the band practicing right beside her. She clapped and hooted, and she walked around the entire football field with her peers.

The world shifted that evening, and I hope it never goes back.



Today I am thankful for a day off from work - a day when the laundry is done and the house is clean - a true day off!

Circle of Friends

Ashley came home from school yesterday with some artwork that she and a student in regular ed created together. With it was a note explaining that the regular ed student was one of the 'Circle of Friends' club at the high school.

I had heard about Circle of Friends from my son who recently graduated from this high school, and I had heard from other parents. Although comments have been mixed, the majority have been positive, and the existence of this club was one of the reasons I chose to send Ashley to this high school.

Regular ed students join Circle of Friends as an extracurricular activity, similar to joining the Spanish Club, for example. When the students have study hall, or sometimes before and after school, they will volunteer in the special ed classrooms. I'm really hoping these students will help bring Ashley the social experiences that most high schoolers find.

As I wrote earlier this month, I've pretty much given up on expecting my school district to provide an actual education for Ashley, but I haven't given up on the social aspect that school can provide. So far, it seems we are on the right road for that, and I will be keeping my fingers crossed that it can continue.

Does your child's school have a similar program?

The First Giddyup

Ashley experienced yet another ‘first’ this past weekend. Imagine for a moment that you cannot see or hear. A person you trust asks you to put your right foot onto a hard bar, then push yourself up, swing your leg over something wide and hard, and then balance yourself and hold onto a small thing sticking up right in front of you. The person you trust never lets go of you, but still is asking you to do something very new and very scary. Would you do it?

Ashley did.

She took a ride on her first ever carousel horse! So in addition to mastering the mounting of the horse, she then had to hold on while feeling her world go around and around. I think that was one of the bravest things she has ever done, and I am very proud of her.

I am also very grateful to Miss Amy for pushing Ashley to try these new experiences!!

(I made a video of the whole thing, but wrongly assumed that I could turn my little flip video camera to take a vertical rather than horizontal movie. So, I have the movie but the only way you could watch it is to turn your head or your monitor sideways. If someone knows of some free software that would help me flip the movie, I would be most appreciative.)

Rest In Peace, Dear Man

He was a 1960’s neighbor – the kind of over-the-fence chats for 45 minutes instead of a wave from across the street. He watched over my family while I watched over him. From the window in one of my bedrooms I could see him sitting on his sun porch. When we happened to realize that the other was looking, we would both grin and wave.

When I first met him eleven years ago, his dear wife was stepping towards Alzheimer’s, and he was photographing every moment in his mind. They were both in their late 70’s and had been married since they were 17 years old. They were two hearts and two souls joined in the way the rest of us dream about.

On July 4th several years ago, he lost his other heart, and from that point on his smiles were few and far between. But, they were always there for me and my family.

He needed a little help, and I needed to help. Every time I sent a meal to him, he would return the empty dishes filled with candy for my children. I planted the flowers in his front garden, and he watered them religiously. Together we attended the funerals of other neighbors, and for a special treat, he loved to take my family to lunch at Red Lobster.

In recent years, I watched his health decline, but he stubbornly refused to give in to infirmity. He was hard-headed and constantly told me to stop helping him so much, but I knew he secretly enjoyed the attention and companionship. He remembered what life was like in the slower, quieter past. He remembered a time of neighbor helping neighbor. He possessed the gentleman gene, and although it was difficult for him to rely on others, he eventually realized the need.

Just four short weeks ago, he was diagnosed with brain cancer, an insipid beast that would send him to be with his wife sooner rather than later. The doctors told him there was no hope and that he had two weeks to two months into which to pack the rest of his life. The first week wasn’t too bad. The second got a little worse, and by the third and fourth, he just wanted to go. He was tired, sick, in pain, and feeling like a burden to everyone.

This morning, he got his wish. Mr. Ed Baldwin took his last drugged and pain-free breath at 6:55 am. He was reunited with his lovely wife, Dot, and I will miss him very, very much.

Busy Not Being Busy

I admit it – I’m an anal-retentive perfectionist with obsessive compulsive tendencies. Combine that with being the parent of children with special needs and ‘busy’ is the only word to describe my life.

I’m always busy, be it taking children to doctors, working both in the office and at home, cleaning and then cleaning some more, washing/folding/ironing laundry, or trying to keep all the mountains of school paperwork organized. I know I don’t relax enough, and I know I should just slow down more, but it’s difficult. However, that is about to change and I have my next door neighbor, Mr. Baldwin to thank for that.

Mr. B. is actively dying of brain cancer. He was diagnosed just a week ago, and the doctors have given him two weeks to two months. I’m betting it’s closer to the two week mark. So, my last week has been busy with all the normal stuff, but also with doing anything and everything I can do to make his last days comfortable and as good as they can be (which doesn’t by any stretch of the imagination mean good as it is usually defined). He has family, but they are not caring for him. Rather, they are already fighting over who gets what once he is gone.

My caring for him has meant making meals, cleaning his house, changing his bedding, and taking him once last time to the bank. I have also put each day’s medicine in little containers marked ‘morning’ and ‘night’ because otherwise he won’t take it. But it has also meant something even more important, and that is taking time to chat, to just visit and listen to his stories and dry his tears when they come.

Those chat times have forced me to slow down, and even under these sad circumstances, I find I am really enjoying the slowing down. Mr. B. is reminding me what is really important in life, and it isn’t the cleanest house on the block or the clothes without wrinkles.

So, I skipped writing a blog last Friday. Instead, in between caring for Mr. B., I went to a friend’s pool and just floated in the sun. I watched Ashley take her first jump on a trampoline, and I ate ice cream an hour before dinner.



Mr. Baldwin needs me right now, and I need him – I need him to remind me to slow down and enjoy myself more. Life is sometimes too short and often unexpected surprises step in to change everything which seemed important.

Thank you, Ed. Thank you for being a wonderful neighbor and friend, and for reminding me to savor life. I hope the end comes peaceably for you, and it will if I can do anything about it. Your lovely wife, Dot, is waiting for you, and I know soon that you will be reunited and happy together again.

High School Buddies

What's one of the saddest things about Ashley going to high school next year? The boy who lives for her every smile will be going to a different high school. We'll all miss you terribly, Justin!



(Pictured in the last picture with Ashley and Justin is Mrs. Sheets, Ashley's teacher.)

My Sorority Sisters

I didn’t belong to a sorority when I was in college, but I feel like I belong to one now.

I ran into one of my sorority sisters in the parking lot at Target yesterday. She, like I, was struggling to get a wheelchair out of the back of a vehicle. The slight smile on her face told me that it was just as difficult for her as it was for me.

Another sister and I connected at the restaurant where I was picking up dinner on Saturday night. Her son with Down Syndrome was very loudly telling everyone at the bar why they shouldn’t be drinking. His mom looked into my eyes, then noticed my daughter shredding all the napkins while waiting for our pickup, and a look of absolute understanding passed between us.

My sisters are everywhere – in the hair salon holding their daughters in death grips and hoping for a passable haircut – at the grocery store putting as many items back on the shelf as they take off the shelf – in the waiting room at our children’s hospital tube feeding their teenagers – and standing outside the women’s restroom trying to decide how they will help their almost-adult son with his toileting needs.

No matter what town I visit, my sisters and I recognize each other. We don’t have special handshakes or secret words or sappy songs we sing. We have our children and the unshakeable knowledge that we are not alone.

Special Exposure Wednesday

A moment spent exploring the feel of sea creatures with your best friend, Miss Amy, at your side, her eyes closed so she can experience the moment as you do in your blind world...