The Music All Around Us

So Steve Jobs, CEO of Apple Computing, announced iCloud on Monday. iCloud is rumored (facts not available at the time of writing this post) to be a “digital locker” type service for the storage of music. It may be very similar to Amazon’s recently released cloud storage service for music.

That’s just what some of my kids, and most of their friends need – another reason to keep ear buds stuck in their heads.

I did a very unscientific study a couple of months ago at Chip’s college. Nine out of ten college students that I observed walking around campus had ear buds in.

I love music, and when I was college age, I’m sure I did my share of listening to music. But now I find music in things other than iPods, MP3 players, and yes, even iClouds. I love hearing the sound of birds early in the morning. I love the sound of wind whistling through the trees. I can sit on my porch and listen to the sounds of my neighborhood – doors slamming, cars starting, children laughing – for hours on end. The pfft, pfft sound of the water sprinkler watering my garden brings a smile to my face, and the woodpecker who has lost his way and is banging his head against my neighbors aluminum siding always makes me laugh. I enjoy trying to figure out what kind of insect is making a certain sound, and I am constantly amazed by the incredibly fast fluttering sound that comes from the hummingbirds congregated around my red honeysuckle plant.

And sometimes, I like just hearing nothing – that silence that along with closed eyes can transport me to another time and place.

I worry that my children (the ones who can hear) will miss those things. I worry that their heads and their memories will only be filled with the likes of Will.I.Am, Jennifer Lopez, and hundreds of other musicians, not the sounds of the world around them.

Maybe it’s an appreciation that will come with age, but I want them to have the experience of those sounds now so that their memories can transport them back in time when they are older.

Maybe I just need to hide all the ear buds for a day or so, assuming I could even get them out of their ears!

Love Can't Always Conquer All

Last Monday I wrote about the child whose adoptive mother sent back to Russia. I tried to explain how everything being written and heard in the press might not really be 'everything.' Today I found an article in the New York Times that does a much better job of saying what I was trying to say:

In Some Adoptions, Love Doesn't Conquer All

Some of the most telling quotes in the article are:

“You can’t ever think you are getting a clean slate,” said Victoria Barrett, who lives in Tiverton, R.I., and adopted two children from orphanages in Siberia, a boy and a girl, now 8 and 7. “You can’t think that all you have to do is love the child and everything is going to be fine. It’s not like that. It takes specialized parenting.” And...

“Most of these parents are grossly, grossly ill-prepared,” said Ronald S. Federici, a developmental neuropsychologist. “Agencies saying they do all this training and support — that’s a bunch of junk. Some do, most don’t. A lot of families are uneducated at huge levels about the psychological trauma of being deprived and neglected, of under-socialized children who have had profound developmental failures.”

“I felt that I was a failure and that I condemned her to a life of hopelessness,” she said. “I knew I couldn’t help her, but I knew I didn’t want to throw her away. But sometimes as a parent you feel like you have a lot more power than you do. You say to yourself, ‘Can I make a difference in this child’s life?’ And if the answer is no, you need to walk away.” And...

“I don’t agree with what Torry Hansen did,” she said. “But I almost think there’s a certain little part of me that says, ‘You just saved yourselves nine years of torment.’ Knowing what I know now, I would have given up sooner because a lot of people got hurt.”

These quotes that I pulled out are the ones that spoke to me - a parent of a child like those described in the article. I didn't give up on my child, but I came close. Please read the article and try to understand how difficult these situations can be for families - not just the parents, not just the children - the families.

I Will Stop Gushing Soon

I promise to stop gushing abou Ronnie soon, but you Moms know what it is like to have a new child!

A reporter and photographer were on hand the day that Ronnie came home, and did a wonderful story in our local paper.

Thought you all might enjoy reading it!

Welcome Home Ronnie

(pictured above is Ronnie's foster mother telling him goodbye)

Where Are The Ice Chips?

I’ve been in labor all weekend. Not the kind that I experienced 19 years ago with my oldest son – but labor nonetheless.

Johnny is coming home on Tuesday. I’ve spent all weekend and several weekends before that getting his bedroom ready, living through a bathroom remodel, trying to get school services in place, locating all the doctors and therapists he will need, buying the foods and drinks he will need, and searching for a vehicle solution that will accommodate his wheelchair.

I’m exhausted. But there is one more task left to complete. Monday night, the night before I become a mother of five not four, I will go and buy a bunch of balloons and make a welcome home sign to surprise him as he and his social worker pull into our driveway at 11am. I will make sandwiches and cookies to serve for lunch to the two social workers, the foster parents, and Ronnie. I will have all his clothes washed and hung up and his bedroom ready, including the Incredible Hulk perched on his pillow!

Wish me luck! It’s almost time to push this baby out, and then the real fun begins!

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.

The Sick Bed

The thought of Ashley having a seizure in the middle of night really frightens me. I worry I won’t hear her – in fact, if the seizure is one of her typical ones, I know I wouldn’t hear her. And when she is sick, the probability of seizures increase, and the seizures themselves can be life-threatening.

Until recently, I have had a small loveseat in her bedroom, and when she was sick, I would sleep, or try to sleep, on that loveseat. The reality was I didn’t sleep but I was at least comforted in the knowledge that I would know if something happened to Ashley. But that loveseat wasn’t a good solution because I needed some sleep to be able to care for her during the day. So, I’m trying something different now.

I had a spare twin bed and mattress and this weekend I set it up in my bedroom. I by no means have a large bedroom. In fact, my house is pretty old, and was built in an era when house space was relegated to the living room and dining room not but bedrooms. So, I now have my queen bed, the twin bed, two large old dressers and a nightstand all jammed into my bedroom. Even though I have to walk sideways to move around the room, I feel so much better knowing that Ashley can sleep on the twin bed and I can have my bed in the event that she is sick.

How do you handle a similar situation? Have you made special arrangements for the times that your child is sick? Or for those of you who have children who are medically fragile, how do you monitor your child on a night to night basis?

Sometimes I Do, Sometimes I Don't

Do people sometimes criticize you for doing too much for your child with a disability? Do they say, “Let them do that? How else will they learn?”
I have, in fact, said similar things to other parents of children with disabilities. I even wrote a blog post titled Don’t Love Me Too Much on this subject.

I believe we need to let our children try and sometimes even fail so that they can learn. But often when I am ‘doing’ for my child, it’s more for me than her.

Yes, my daughter is capable of dressing and undressing herself. Yes, she is capable of washing her hair and completing her bath alone. Yes, she can get up and get something if she wants it. And yes, she needs to be pushed sometimes to learn how to do things for herself. But often the times I spend ‘doing’ for her are some of the sweetest times we share.

I love helping her dry off after her shower. I love helping her get dressed in her warm pajamas, and I love the feel of her skin against mine when I am putting lotion on her arms and legs. I love the softness of her hair as I blow it dry, and I love tucking her into bed just as much now that she is 14 years old as I did when she was 2 years old.

I realized a long time ago that I am a ‘helper’. I take great pleasure in helping people – my children, my neighbors, and my friends. It’s just how I’m wired to live. And with maturity has come the knowledge that sometimes it is good to step back and not ‘do’ for others, and sometimes it’s perfectly fine to ‘do’.

The moments of my life with my children are fleeting. I refuse to waste a single one of them just because someone else doesn’t agree with my approach to helping my child grow. Growth is not measured only in the number of skills one has, but also in how much they love and connect with others.

I Am The Mother

If you are fresh out of college with a degree in education, social work, medicine or something similar, please do not pretend to understand my child’s needs better than I understand them.

If you have been a practicing professional for many years, and your practice has included children with special needs, I am interested in your advice and opinions. However, the ultimate decision on how to raise my child rests with me.

Just because you have a cousin who has a child with Autism, you do not know what is best for my child with Autism.

If you have raised no children of your own, don’t act like you know how to raise mine.

Unless you plan to support my child as an adult, you have no say in the choices my child and I make concerning his/her future.

It’s kind of you to try to understand the worry, the guilt, and the all consuming love I have for my child with significant special needs, but you really and truly cannot understand. Please do not judge me based on your limited understanding.

Just walk beside me – hold my hand when I need to feel someone’s touch – hug me when I am down – cry with me when I am overwhelmed with worry.

Don’t lecture – don’t judge – don’t pretend.

Rejoice with me in my child’s every accomplishment, no matter how insignificant it may seem to you.

Respect the choices and the decisions I make. Respect me. Respect my child.

I promise I will do no less for you.

Finding My Voice

Growing up, I was labeled a shy child. As a young adult, I usually let everyone else do the talking, and I was always uncomfortable in social situations. When I moved into the business world, the thought of having to speak in front of a group of people could make me physically sick.

The fact that I am no longer like that I owe completely to Ashley.

I knew before I ever brought Ashley home that I would have to be her ‘voice’. I would have to learn to speak in front of groups of people, often hostile groups. I would have to learn to stand up to doctors and therapists and sometimes question their decisions. I would have to learn to seek out what she needed and then be bold in getting those things. I would have to become her lifetime advocate.

Unlike when I was forced to speak in front of a group of people in my business community, I had no time to think and worry about my speech. I had no time for the jitters to take hold. Rather, Ashley needed my voice, my advocacy, and hesitating would not get her what she needed.

I was immediately thrown into fighting my local hospital when they chose to treat her like a ‘Medicaid’ baby and deny her and me the same considerations someone with expensive insurance would receive.

Less than 6 months about bringing her home, I had to begin my battle with our school district, fighting from the time Ashley was two years old and continuing even today to get her the appropriate school services. That battle took me to speaking before the school board, arguing in IEP meetings, trying to mediate our disagreements, and finally to Federal Court several times.

I’ve fought our state’s Medicaid system to provide for Ashley’s unique needs – a personal care aide who knows sign language and needs to be paid for that skill; a bathroom that was accessible and conducive to developing her self-sufficiency; and ongoing medical supplies when they wished to place limits.

I’ve stood before our state’s General Assembly, and in front of them and a few hundred other people in attendance, have told Ashley’s story. I’ve learned to lobby for people with disabilities and how to fight when their rights are ignored or violated.

In short, knowing that I need to be Ashley’s voice has helped me find my own voice. I can’t say that the jitters are gone completely, but I can say that I am no longer labeled shy, and I can say that I believe I am making a difference both for Ashley and for others.

Poor Little Sick Disabled Girl

I’ve warned Ashley’s teachers. Amy, Ashley’s intervener, has warned Ashley’s teacher. Yet they still fall for Ashley’s manipulation.

Yes, Ashley is very cute. Yes, that sweet smile will melt your heart and make you want to do anything you can to keep the smiles coming. Yes, your heart melts when she leans in to kiss your cheek and sign “I love you.” And yes, she knows exactly what effect she has on people.

Ashley wasn’t in the mood to go to school yesterday. It was a gloomy, rainy morning and she preferred to stay curled up on the couch next to me. But, when the bus arrived, her cute self had to get up and get on the bus. You see, I am somewhat immune to her antics. But the staff at this new school is not, and they are not heeding our warnings.

Ashley acted tired when she got to school. She kept putting her head down on the desk. When her well-meaning aide and teachers asked her what was wrong, she signed that her head hurt and her throat hurt. “Poor thing”, they thought and immediately carted her off to the clinic. They told the school nurse that Ashley just wasn’t acting like her normal cheery self. They, and the school nurse, decided she must be sick and then decided to call me to come and pick her up.

She had no fever. She wasn’t vomiting. She had no diarrhea. But because she just wasn’t “being herself”, she was allowed to lie down in the quiet, dark nurse’s office, and immediately she took a nap.

I arrived to get her. I woke her up, and the first thing I saw was her sly smile. Then came the giggle. She knew she had won – I was there and I was taking her home. (Once the decision is made by the school nurse that a child needs to go home, the decision will not be reversed.) It was amazing how much better she seemed as we walked to the car. And her good spirits continued through the afternoon and evening.

Ashley knows how to manipulate. Just because she has disabilities, it does not mean she is stupid. She is a teenager, and somehow very soon, her teachers and aides need to understand what she is doing.

Somehow I need to help them learn how to unwrap themselves from her little finger!

Today I am thankful that the rain has stopped and the sun is out. We haven't seen the sun much recently.

Worth Every Challenge

From a very young age, I always wanted to make a difference – to know that my time spent on this earth was worth something. As I have gotten older, those thoughts refined themselves into wanting to leave the world a better place once I am gone. And through the adoption of some very special children, I believe I am well on my way to achieving that goal.

November is National Adoption Month. Thousands and thousands of children are waiting for families to call their own. These children often have been through hell. They have seen and experienced things that no one, and especially a child, should see and experience. Parenting them will not always be an easy job. In fact, sometimes it will seem downright impossible. But it’s not.

When I first decided to adopt as a single parent, most of my friends and family told me I was crazy and shouldn’t even consider parenting another child, especially a child with significant special needs. In fact, many of my friends have felt that way when I decided to adopt two more times, and when I told them just this year, that I am ready once again to adopt.

Maybe I am crazy, but I am not wrong. Adopting and parenting children with special needs, both medical and emotional needs, has been one of the most rewarding aspects of my life.

I know beyond a shadow of a doubt that I have made the lives of three very special children better than they would have ever been. More importantly, my life has been enriched in a way that words just can’t express.

I’m searching right now for the next addition to my family. I want a child with significant medical needs – a child that probably is growing up in an institution rather than with a family. I know it will be tough, but I have an support system in place, the willingness to tackle any challenge, and more than enough love.

What about you? Would you consider opening your heart to a child that needs a family? I promise that if you do and it gets really tough, I will be here to help you….

Today I am thankful for the social workers who believed in me and who have helped to make my family what it is today.

Social Services - Part 1

I had to do one of my least favorite things in the world this week – go to our county social services office. Since I am Corey’s legal guardian (he is Native American and his tribe will not agree to an adoption – although they don’t want him either), I have to check in with social services every six months. They like to know that Corey is doing well and that he is still in school (I have to produce his report card each time). Plus, he gets to keep his Medicaid if I make the appointments.

The waiting room at the social services office is usually not a happy place. Many of the folks there are asking for monetary benefits and if things don’t turn out as they expect, they can get really angry. And they don’t mind sharing that anger with everyone within earshot.

I also usually see some young teenage girls – often very young – who are pregnant. I assume they are also there searching for benefits, but it saddens me to see them there alone, and then to imagine what their life and the life of their child will be like.

But my visit this week took the cake. The room was packed. My social worker told me later it has been that way ever since the economy took a nosedive. Into the crowded room walks a late twenty something woman, talking on her cell phone and yelling at the young child trailing behind her. She spots two seats, grabs the child (no more than a year old) by his arm and yanks him into a seat. She takes the other seat, and never once slows her cell phone conversation.

The baby is active – seemingly a typical one year old. He wants to explore – he wants a drink – he wants to be held. He communicates all this by whining through his pacifier and tugging on his mother. She alternates between ignoring him and hitting him.

He has a doughnut hole in his hand that he doesn’t seem to want. He drops it on the floor. The mother swoops it up and stuffs it in his mouth. A one year old….

She yells at him to stop whining. She tells the person on the other end of her phone call that the baby is ‘gonna get a whippin’.

Just as I can’t take anymore, a social worker calls the woman back into the office. The woman again yanks the baby by his arm and drags him along. She isn’t with the social worker more than five minutes, and then I see them leaving – the mother with her phone call reestablished, and the baby trailing behind.

It’s then time for my appointment. I share my observations with the social worker. She shakes her head, and I am left to wonder if anything will be done. I doubt it.

Part 2 tomorrow….

Today I am thankful that I had several wonderful mentors when I first became a mother.