Getting To Know Us

This was originally posted in 2008, but I've spoken to a couple of parents this week who may have missed it the first time...


WE...

• Listen for the cry of the baby we just gave birth to, only to hear a small moan

• Wonder why our baby is not rolling over, lifting his head, watching us move, or many of the other developmental milestones

• Know how an NG feeding tube and a heart monitor work

• Don’t understand why our baby feels so floppy

• Just want to see one smile from our toddler, one glance into our eyes that seems meaningful

• Have nebulizers, feeding pumps, syringes, tubing and extra peg tubes in our child’s closet, the car, and at school

• Keep an envelope on the back of the front door that lists all our child’s diagnoses, all the meds, and contact information for all the specialists who follow our child. This envelope is given to the rescue squad each time they come to our house to take our child to the emergency room. Eventually, we don’t need the envelope because all the squad members know our child. They even know where our child’s bedroom is in the house because they have been there so often.

• Greet the emergency room staff by their first name

• Know which schools in our school district offer which programs, and we know which programs to avoid because we have heard from other parents.

• Know and have had conversations with the school’s director of special ed, the compliance officer, and the superintendent. The secretaries for all those people have our names and phone numbers on speed dial

• Have a list of attorney's names and phone numbers pinned to our bulletin boards at home

• Often don’t attend church because we can’t find one that welcomes our child

• Avoid taking our child on errands because we can’t take the stares and rude comments

• Say we get used to the stares and rude comments and that they don’t really bother us. We are lying.

• Know the difference between occupational therapy and physical therapy, and we know that our child can have speech therapy even if he or she doesn’t speak.

• Know where to find the toys best suited for our child’s disabilities, but usually we can’t afford them. Instead, we know how to adapt regular toys and books.

• Have car seats and helmets for our teenagers.

• Probably haven’t slept through an entire night since our child was born – even if our child is 19 years old.

• Know the best way to remove feces from walls and clothes.

• Know how to strategically dress our sons so masturbation will be more difficult to accomplish

• Never leave the house without our child’s comfort item, and at least two backups to that comfort item.

• Long for close friendships, but usually have none. If we do have a close friend, it is usually another parent with a severely disabled child.

• Have alarms on bedroom doors so we know if our child starts to roam at night.

• Lock up medicines, foods, and sometimes even sharp objects.

• Know the names of IV antibiotics and at least 7 seizure medicines

• Know all the rules of the Family Medical Leave Act

• Fear what will happen when our child can no longer see the pediatrician and we have to find another doctor

• Have a freezer full of macaroni and cheese, and a refrigerator full of chocolate pudding.

• Know which hospitals have the best food in their cafeteria

• Know the type of doctor who makes prosthetic eyes

• Are deeply in debt because of all the stuff insurance won’t pay for, like home modifications, adapted devices, special clothes, lawyer bills, and the list goes on and on

• Have nightmares about what will happen to our child should something happen to us, the parents

• Love our children more than life itself

WE...

Are the parents of a child with a significant disability, and this list is only the beginning….

Please feel free to add to it.

Heroes in my Eyes

I attended a support group meeting yesterday afternoon. The meeting attendees were all parents of adopted children, and over lunch we talked about challenges and suggestions and understanding. These meetings are only held every other month, but I get the distinct impression that everyone has been impatiently, if not desperately, waiting for the next meeting.

Although I am an exception, the adoptive parents all have children with very significant behavior and emotional issues. Most were adopted from the foster care system, and most of the children have had multiple foster home placements. Some even have had multiple (failed) adoption placements. I got the impression that for most of the children described, this was their final chance at a family.

The parents described aggressive behaviors - putting holes in walls, kicking in TV screens, throwing and breaking everything within reach, and/or physically injuring themselves, their parents, their siblings, and even strangers sometimes. The children curse with abandon, run away regularly, and constantly push every boundary their exhausted parents attempt to enforce. These kids sit in counseling sessions and refuse to speak. They are promiscuous - they start fires - they steal and lie - they hurt animals. In other words, they are very, very damaged human beings.

Yet at the meeting was a roomful of parents still committed to helping these children. The parents were tired and scared, at their wits end, and wondering if truly the could continue to parent these children. But they do continue. I've seen them at every meeting for years. For most of them, their lives get much harder before they get better, and in some cases, they never get better. Yet they still stand by and hope for healing for their children.

These parents, the ones you seldom see because they cannot take part in community events, school programs, or church services, the ones whose lives revolve around keeping people safe and unharmed, the ones who continue to try when others of us would throw up our hands and give up, these parents are heroes. I have no idea where they find the strength and the fortitude to go on, but with so many damaged children in the *system*, I am so grateful that they do.

So, the next time you see a parent who is struggling with a child like I have described, don't be so quick to judge. Don't try to lay blame on the parents. Do thank them, smile at them, and maybe even give them a pat on the back. You really have absolutely no idea what their lives are like, and I'm betting most of you don't ever want to trade places with them.

Pass The Painkillers Please

I've only had a migraine maybe half a dozen times in my life, but boy when I do....Monday was one of those days. And unfortunately for me, it was also a day that schools were closed.

As most parents of children with severe disabilities know, life doesn't get put on hold just because we get sick. I've often wondered which was harder - (1) when my children are sick, (2) when I am sick, or (3) when we all are sick. And the answer, at least for me is (2), when I am sick. The kids are still their normal unique, needy selves but my reserves are pretty much depleted.

So I took a ton of ibuprofen,which I am not supposed to do because I am allergic to it, but it is the only thing that will even begin to dull the migraine pain. The headaches have been so infrequent that going to a doctor to get prescription meds seems like overkill. Fortunately the ibuprofen helped a bit, and once the kids were in bed and tended to, I headed to bed myself...

So how about you? What are your strategies for getting through the sick times and still taking care of your children's needs?

Not A Skill Set I Want

Being the parent of a child with special needs, especially when some of those needs are medical and life threatening, is a difficult job. There is absolutely no doubt that we need help sometimes. We need nursing care for our children – we need specialists like neurologists, gastroenterologists, therapists, and such – we need for our friends to sometimes help ease the burden by bringing us a meal, helping with our other children, or even just being available to lend an ear. But ultimately, the care of our special needs children, as long as they reside in our homes, falls to the parent(s). We have to learn to cope for those times when we don’t have help. We have to know how to survive the long sleepless nights, the lack of time to shower, and how to care for everyone else in the family. And 99.9 percents of the parents of special needs children that I know (and that’s a whole lot) do know how to survive, how to cope when support systems fail. But recently I have met a parent who chooses not to cope without support.

This particular parent is married and has two children – one with special medical needs and one without. This parent has a LOT of support – nurses, grandparents, friends. Neither parent works, yet they live in a nice brick home with a large yard. They are currently working with a contractor to add on to the house. The mother regularly has her hair colored by a professional and has manicures and pedicures very frequently. She has an active social life that doesn’t include her children, and shopping is one of her favorite pastimes. They never lack for food, furniture, or entertainment options.

How does this particular family make all this happen? Primarily through the power of Facebook.

Each day brings a ‘request for prayers’ for a particular need. This morning’s prayer request involved hoping Mom can make it through the day without the nurse who happened to call out sick. Sometimes it’s comments like, “haven’t been shopping in 3 days – going through withdrawal” or “my nails look so bad that I just don’t want to leave the house”. Those comments usually draw someone to meet the need.

Your initial thought might be that I am jealous of this mom. You would be totally wrong. I also lack for very little but it is because I ensure my family’s needs are met. I’m not fond of always having people in my house, be they nurses, therapists or friends who visit unannounced. It’s just not in my nature to ask, ask, ask of others. I am the giver not the taker. And it has never once occurred to me in my life that I had a right to rely on other people to make my life what I want it to be. So no, I am not jealous.

What I am is embarrassed. I can understand when people of a certain political party don’t feel Medicaid and other such programs are necessary if they happen to meet or know this family that I just described. I can understand when politicians say we should rely on friends and our church to help meet our needs and therefore don’t need social programs to help us. Thing is, what this particular family has honed to a fine art is not the norm, is not even close to the norm.

This mom has a skill set that I do not wish to have. I seldom talk about religion, my beliefs or my faith on this blog. But today I am making an exception. Long ago, when I first became an adult and then later a mother, I chose a particular passage of the Bible as my guiding light. It is Proverbs, Chapter 31, verses 10-31.

Look it up and you will understand why the actions of this family and this mother bother me so much.

My Kind of Vacation

If you are the parent or other family member of someone with a disability do you ever get tired of the disability? Do you get tired of the explaining, the questions, the stares, the changes you must make in your life? Do you feel like you work as hard as you can and yet you still cannot make enough of a positive difference for your loved one? Do you just want a vacation from disability?

I read this post today about a Mom who is right there. And this one from a single dad with a disabled son and daughter. And I understand, to a degree.

I have found from reading many blogs from parents of children who are severely disabled that those parents experience so many different emotions than I do based merely on the fact that they gave birth to their child rather than like me, chose their severely disabled child(ren). Sure, we share some of the same emotions – sadness, hope, despair – but there is one big emotion that we don’t share – guilt.

With Ashley, I was not the one who drank to excess during her gestation. I was not the one who was bulimic and chose not to get prenatal care. I wasn’t the one who smoked and did drugs. I am not the one responsible for the effects all those things had on my sweet Ashley.

But I am also not the parent who did everything correctly while pregnant only still to have a child with severe disabilities. That, I believe, is a source of even greater guilt for some parents.

So I think I can understand the words of parents who had no choice in their children’s disabilities. Their words are difficult for me to read, and I think that is because I did have a choice. While I appreciate the raw emotions and the gut wrenching honesty of those parents, I find that it hurts my heart to read their words too often. If I feel guilt, it’s because I walk away from those brutal and honest words, and the pain that is shared. Guilty because I know listening and reading doesn’t do me any good. I will stop by occasionally because I need their perspective, but not often enough that their visions darken mine.

Perhaps that means I am not a very nice person, but I am a parent to children with severe disabilities, children I CHOSE. And my life is richer beyond belief because of those choices.

I don’t want a vacation from disability – I want a vacation with my children without other people handicapping them and our family.

Front Porch Biology - Take 2

I wrote back in 2007 (have I really been blogging that long??)about an impromptu biology lesson with Ashley on our front porch. This week another lesson, this time with Ronnie, happened.

Ashley's school bus had just picked her up, but Ronnie and I were still waiting for his. He noticed two squirrels frolicking in the front yard, and signed to me that they were 'making babies." That took me by surprise even though it shouldn't. He is 16 years old. I signed back, "Yes, they are," and we continued to watch.

Ronnie pointed out that the male squirrel kept biting the female squirrel. He signed, "Fathers shouldn't be mean to mothers." Ummm, I think we weren't just talking about squirrels anymore.

I asked him if his birth father had been mean to his birth mother, and he signed, "Yes." I told him that I was sorry and that he was correct, fathers should never be mean or hurt mothers.

He watched a few minutes longer. I hugged him and told him that I loved him. He signed it back as his bus pulled up to our house....

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.

We Need a Change

Summers are tough for my 16 year old son, Corey. While he complains about the structure and demands of the school year, when summer rolls around, he moves about like a zombie, never quite knowing what to do.

Corey is not a kid who is self-motivated. As much as I have tried to help him with that, I'm sorry to say it just isn't working. He needs someone to tell him what to do, how to do it, and when to do it. And honestly, I'm a little tired of doing that, and feel like at age 16 I shouldn't have to tell him to brush his teeth, clean his room, wash his clothes, etc. etc.

Since he joined my family four years ago, I have tried a lot of different things to address this issue. I've tried chore charts, very, very detailed chore charts. I've tried positive reinforcement. I've tried negative consequences. And while those things may have an initial effect, they usually stop working after a day or two.

So Corey's summer is spent watching TV, listening to his IPod, wandering around the house, or getting into trouble for not doing what he should be doing. I asked him to get a job for the summer, and he showed little to no interest. He gets annoyed because his brother does have a job, and money to spend, but not annoyed enough to do anything about it.

June's not even over yet and we are already grumbling and snapping at each other. I really need some ideas...

Out Of The Dark?

If a surgery existed that might help your child’s disabilities, would you agree to it? Parents of children who are deaf agree to cochlear implant surgery daily. But what if your child was blind, and what if the surgery was experimental?

Check out this link:

Dark World May Become Brighter For The Blind

I wrote about my feelings on this subject two years ago, but what about you? What would you do?