Well we have appointments set up for next week with two different people for two different things.
1) Cory from University of Michigan Seating Systems is bringing out a motorized wheelchair for Daniel to try out. Obviously because of his lack of control with his arms, they are looking to start teachign Daniel to use his head; literally, to control the mechanism to make the wheelchair move. Currently I can't tell you if I am comfortable with this or not. All I know is that it makes me very sad.
2) We are also going to be meeting with another person about a stander. This type of stander is called a "Standing Dani". This should help Daniel get some trunk control and hopefully build up some muscles. All I can do is hope that some day we won't need this stuff and we can have a really cool garage sale with all this medical equipment!
3) We are also going to be meeting with Robin for his DAFO's (Dynamic Ankle Foot Orthotic). He has outgrown his first pair and needs to be refitted for new ones. Hopefully it won't take too long to get them. One the other hand, a summer without having to wear DAFO's will be nice to not have sweaty, stinky feet! :)
Feelings about all this stuff: sad, confused, overwhelmed, happy to help him, but sad to admit he needs these contraptions.
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- ABR - Advanced Bio-Mechanical Rehabilitation
- Canine Companions for Independence
- Cerebral Palsy Treatments
- Conductive Learning Center
- Dolphin Therapy
- Hyperbaric Oxygen Treatment
- Stem Cell Therapies
- TENS - Transcutaneous Electrical Nerve Stimulation
- TES - Threshold Electrical Stimulation
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Tuesday, May 29, 2007
Well we have appointments set up for next week with two different people for two different things.
Posted by Melanie at 10:24 PM
Monday, May 28, 2007
I HATE with a passion, (yes I know hate is a very strong word) when people stare or whisper when we are out and about. I also hate the hateful things people say in anger, or when they are purposefully trying to be hurtful. What they don't understand is that even after they are "caught" staring, or "caught" by being overheard, or you are face to face with them when they say the things. That no matter how soon afterwards you apologize (if you've even got the class to do that), those words, looks, etc......they stay, they are burned into your heart and your brain, and they can NEVER be taken back. EVER. You may try to accept the apology, but deep down we know, that is how you really feel, and that is what is SAD. Cause there is nothing we can do, or choose to do to change the person we are. We are good people, and our feelings count too. So for those of you out there who know who you are........here's a little story for you.
There once was a little boy who had a bad temper, and was mean. His father gave him a bag of nails and told him that every time he lost his temper or was rude, he must hammer a nail into the back of the fence.
The first day the boy had driven six nails into the fence. Over the next few weeks, as he learned to control his emotions, the number of nails hammered daily gradually dwindled. He discovered it was easier to hold his temper and snotty comments than to drive those nails into the fence.
Finally the day came when the boy didn't lose his temper at all, and he thought twice before saying mean things. He told his father about it and the father suggested that the boy now pull out one nail for each day that he was able to be nice and hold in his anger.
The days passed and the young boy was finally able to tell his father that all the nails were gone.
The father took his son by the hand and led him to the fence. He said, You have done well, my son, but look at the holes in the fence. The fence will never be the same. When you say things in anger, they leave a scar just like this one. You can put a knife in a man and draw it out. It won't matter how many times you say I'm sorry, the wound is still there. A verbal wound is as bad as a physical one.
***Maybe you'll learn that before you start calling someone names in anger or say they are mentally "off kilter" you'll think about this little story, and remember that the "I'm sorry" that will follow later, doesn't mean too much to the wound that is left in the heart. And maybe someone else will learn that you don't say things about little boys that did not ask for what is happening to him right now. He didn't mean to be born into these conditions, it isn't his fault. And oh by the way.....if I hear it again that you said what you said.........I won't be so nice as to let you read a little story to understand.
Posted by Melanie at 11:08 PM
Sunday, May 27, 2007
I do have a lot to update on as this was our first week back from Conductive Learning Center. If anyone from there is reading this......I wish you guys the best of luck in the school, it seemed really cool, and it was great to see everyone making strides. As I stated in prior blogging, you just have to mentally be ready to accept things and I don't think right now I am.
This won't be a long post as I still am trying to gather all my thoughts on what has happened in the past week with Daniel, family and relationships. But will post more on that later.
We have continued to give Daniel 1 tsp. of Omega 3-6-9 (liquid lemon fish oil) and whether it be just a huge coinkee-dink (coincidence) that he all of a sudden went from babbling a few times a week to A TON all day. And its like he is carrying on a conversation with you. He'll do his "Oyede oye, doooooo" and I'll respond with "Oh really now, ya don't say" and he'll go on with another line of jibber-jabber, stop and look at me like are you going to answer me? so I will respond again and this little "ping-pong" conversation goes on and on for a good five minutes. Hes trying to say something, and he is proud of himself too. Its cute because you can hear the inflection in his voice. So kudos to the yahoo apraxia support group that gave me the idea of fish oil.
On another note....my third daughter Brittany, oh my, is done with high school. She had her prom this past Friday night, and she was beautiful. I am so very proud of her. She will be leaving us in a few months to go to Central Michigan where she will start another part of her life. Not looking forward to that day.
And another note: My first daughter Caitlin, oh how she makes me feel so old! She is looking into buying her own house. UUGH. She is a wonderful preschool teacher, and during the summer a perfect nanny.
And another note: My second daughter- Alexandra......talk about making me feel old........like Grandma old. Enough said! Will update more in a few months on this topic.
And then there is my baby girl Victoria- only a few days left of her "junior high years" and she is on to high school. Where she is going to be in honors classes up the ya zoo.......Good job Tori! Where did my baby girl go?
Tuesday, May 22, 2007
If you think I am a horrible mother for not finishing out CLC, or that we aren't somewhere that you wanted us to be, or you feel we make excuses.....please just read this article, and maybe, you will find it in your heart to understand just a little bit of what it is like to go through a day...and the struggles we go through as a family.
Posted by Melanie at 12:20 PM
We are getting back to our normal schedule this week. Today we are starting with our Ms. Karen OT visit and then in the afternoon Ms. Carol PT visit. I am hoping to get back into Speech this week also, just need to make a phone call to Ms. Anna.
I will say on the Conductive Learning, that it was a very good program, the school is wonderful, and the people there are great. But you have to be prepared (more than I was and I thought I was soooooo ready) both mentally and physically. NOT just the child, but also as the parent. IT is hard on the child to get use to the different people working with him, the different routines, the structure, the hard work. It is very tiring. Daniel fell asleep EVERY day within 90 seconds of being in the car. I am serious when I say that. And the parent/toddler group only goes for 3 hours, not the 7 hours that the older kids go. Daniel did fairly well, he learned some things, I learned some things and we will continue to practice MOST of the things we learned. Daniel made a fair amount of progress in the time we were there, and I will say some things work for some people and some things don't. I won't say that Conductive Learning didn't work for us, it did, but emotionally the whole experience was very,very hard on me (the mother)and Daniel (he hardly jibber jabbered at all). I don't know how to explain it, its hard being away from your family, yes that is probably part of it, but the whole thing just wiped me out emotionally. I still have not recovered, ask Lonnie, I am crying every 5 minutes. Life, the crap that Daniel is dealt, the struggle he has ahead of him, the things he will miss out on that most take for granted. I am grieving, not for me, but for the things Daniel will have to endure......I am grieving, for the life and childhood that Daniel is missing. I feel such sorrow that Daniel will have to struggle thought things, and it tears me apart. I HATE that Daniel can't have the life that a normal 2 year old has, the running around, the playing, the getting into things. I HATE that Daniel's life is filled with therapies, doctor appointments, stretching, medicines and equipment. I don't even really know where to start or how to explain it. It is hard, no matter how great the program is, it is hard going by yourself, away from everyone you know, it is hard to see your child struggle and cry, you are there trying to help him, but he doesn't understand that and it seriously rips your heart out. I told myself over and over again, this is helping him, and it was and it will continue to help him, but it will be me helping him in an enviroment that he is use to. We will build him the plinths and the chair, and we will follow the thought process of Conductive Learning, but it will have to be on the comfort level that Daniel and I are able to handle. I don't know if that makes sense to anyone who reads this, but you know when your child is shutting down and not working with the program, your gut tells you when its just not accomplishing anything. And when Daniel got on the plinths, he shut down, it scared him for whatever reason, but in his little mind, when he had to lay on his back on those plinths, he was terrified, and I couldn't watch that. So we will practice here at home, we will get him use to them, and gradually, he will become comfortable with them and they won't be the scary table that he didn't like. :)
I know there are some of you who read this and say "oh my god, let the kid cry a little". And I will tell you that I did, and I did again, and I will let him cry again on other things in his life. But for right now, for today, for this week.......he is my baby boy, and he will have many many more battles and scary things in his life that most of us will never have to deal with, that he will have to deal with, and for right now.........I am going to pick him up, give him a hug, and sooth him, and tell him not to worry I'm here and NOTHING is going to happen to him. I am his protector, and I want him to know that I will protect him forever from whatever I can.......from whatever horrible, scary thing. So do I baby him? Damn straight I do...he's got a tough battle for his life, and I'm going to fight what I can....and I won over the plinths. (this time!)
Posted by Melanie at 12:05 AM
Sunday, May 20, 2007
Well we've come to the end of a relaxing weekend. It is nice to be home, Daniel is babbling, happy and we are working on the things we've learned at CLC. He goes potty in the potty chair when we put him on it. He is using his arms more, and he is now letting us feed him again. I think he figured he got some independence when he was in Grand Rapids, and he liked feeding himself so that was the only way he'd eat for a few days. Whenever we went to his mouth with the spoon he'd turn his head and do a grunt to tell us "no, I want to do it". give him the spoon and he was as happy as a clam.
We started him on fish oil (Omega 3-6-9), this is suppose to help the brain in many ways. Its in liquid form and as you can imagine it probably doesn't taste that great, but he is a good boy and drinks it down. YUCK! Anyhow, we started it on Friday, so we'll see if we get a difference in his jibbering. Today I could have sworn he said "ELP", Brittany heard it too cause she looked at me like...did he just say Help?
We went to Drew (Daniel's friend) fundraiser on Friday night, it looks like that had a good turn out, so wish them luck in their continued journey to get Drew's seizures under control.
On another note for fundraisers, as I've posted before my mother has breast cancer that has metastasized in her lungs. My brother Greg helps with the 3 day breast cancer walk and for part of his fund raising, he decided to become part of a group of men that posed for the "60-mile men" calendar. Even made it on the local news too!. Anyways calendars are $20 and they are from August 2007- July 2008. If you would like one please contact me and we can get one sent out to you, and if you'd like to have it personally autographed by Mr. December (my brother Greg) he will be more than happy to sign it.
Click here for the link to the news story.
If you'd like a calendar, please email me : email@example.com
Wednesday, May 16, 2007
Daddy is coming, Daddy is coming! Dad is on his way over here to see us for two days and then drive home with us on Friday after school. Then we only have ONE more week left of Conductive Education in Grand Rapids. We found another "school" that runs a program similar to CLC that is some what closer to home. It is called Conductive Education Center of Metro Detroit. Now we don't know much about this program except from what I have heard from word of mouth from people on support groups. They are in Shelby Township, which is a ways away but its better than being away from home for weeks at a time. I'd rather drive that drive everyday. But from what I hear, you have to be accepted into the program, and it is difficult to get in, and that it is for the severely impaired, I guess I need to someday admit that perhaps Daniel is severely impaired. I don't think he is, but I suppose others would, if you heard the list of all the things that are wrong with him, one might come to the conclusion of "severely". I would really like to continue with the conductive education, I am seeing improvements in other kids that are staying at the Ronald McDonald House. There is one child who is 8 that has Cerebral Palsy (SQCP), when he first came here this session, he was walking with difficulty with two canes, when I came back this week, he is walking without those canes. Yes he still is not completely steady, but he is doing laps around the house. The other night he was able to walk around for about 30 minutes. Good Job to Jospeh.
Posted by Melanie at 5:27 PM
Tuesday, May 15, 2007
Posted by Melanie at 8:56 PM
Monday, May 14, 2007
After about 15 minutes of solid crying I said ok enough, he is so upset, his eyes are sealed shut, his body is all tensed up, and he is crying so loudly, there is no way this is productive in anyways. So, I gave in, I picked him up and gave him a big mommy hug. I just couldn't help it. I tried to talk him through it, but it just wouldn't work. I've discovered I have to have some really good "stay strong" pills to be able to sit for that long and let my baby cry.
Now once we got through that session, all was well. We did the "AWFUL TABLE STRETCHES" and moved on to the potty sitting....yes here we go again another potty picture, and yes i WILL Shout it to the world...DANIEL WENT POTTY IN THE POTTY AGAIN!!! He must have been showing off to Caitlin, so we got to sing the "Bravo Daniel " song. For that he got a bunch of beads to hang from his chair. He was oh soooooo happy for the beads. Kind of reminds me of Mardi Gras! You show something and you get beads!
OOOOOH LOOKY LOOKY LOOKY AT DANIEL'S BEADS!
Daniel is starting to do really well at snack time, he is able (with some help) about to scoop up his food and feed himself. He still tends to try to bring his head to is hand instead of his hand to his mouth (Sorry Ms. Karen, we're working on it!) He gets a little messy, yes, but there is such accomplishment on his face (along with food) when he is done. My how this child loves his snacks! Now think about it, you've got to have some talent to balance your butt on a chair, hold on with one hand to the bar to try to keep balance, hold your spoon, scoop up your food and get it to your mouth, all without falling off your chair! can you say "SUPER BIG BOY!"
Posted by Melanie at 8:50 PM
Sunday, May 13, 2007
It was nice to see everyone again. There is some sadness when I see other children that are Daniel's age or younger doing things that he isn't able to do. Don't get me wrong, I love that they CAN and are ABLE to do it, I guess you'd call it envy or jealousy. I wonder if Daniel is thinking in his smart little head..."how come I can't do that? Why can't I run and play with like they do, or how come my words don't come out?" I wonder if deep down, Daniel is sad.
It scares me because what if I can't know what is wrong with Daniel. What if he can't communicate with me and I can't understand him. Or what if he gets lost or something and he isn't able to tell anyone who he is, or how he feels, or that he is lost. Can you imagine? I mean imagine, not being able to communicate, not being able to write down what is wrong. NO means of communication. You can't use your hands, you can't use your voice....try it for 1/2 a day, see what feels you have, how alone you must feel. UUUGH....
Anyways sorry for my rambling....but these are the types of things that go through my head on a daily basis, anyways.....back to the pictures, hope you enjoy them.
Posted by Melanie at 8:16 PM
Posted by Melanie at 8:38 AM
Saturday, May 12, 2007
by Ken Moses, Ph.D.
I was taught that the way to deal with adversity or pain was to "tough it out." If you could avoid showing the pain, then you had "beaten the rap," and dealt with the problem competently. I am a psychologist who works with people who are grieving over profound losses. Few would argue that facing the devastating and continuing loss of having an impaired child is among the most painful experiences that a person can confront. After working with parents of the impaired for many years, I have come to believe that I was given bad advice. I have come to believe that pain is the solution, not the problem.
Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections into the future. Children are our second chance, our ultimate "life products," the reflection and extension of our very being. To know that a human life exists that grows from our genes, our bodies, that is a result of our existence, brings a measure of spirituality into the most hardened individual. Something basic to our sense of being is stirred when we witness the miracle of the continuity of life. What happens when this core experience is marred irreversibly by disability? How does a parent survive the devastation of a handicap in their child that shatters their heartfelt dream? How do they go on? How can they help their child, their other children, themselves?
Before I started working in this field, I noted that people who faced adversity basically became better or worse; none stayed the same. What made the difference? Some parents seem to pull their lives together around their child's impairment, others go to pieces. Over fifteen years ago, I ran my first parent group comprised of mothers of children with special needs. These people helped me enormously as I started to answer some of the important questions that relate to coping with childhood impairment.
I began the group using traditional group psychotherapy methods, an approach designed to intervene on psychopathology. That approach did not work for a simple reason: those mothers were not suffering from pathologies, they were reeling from the impact of having disabled children. Gradually I let go of the old way of doing things and permitted myself to listen and learn from this courageous group of parents. Slowly, a pattern emerged that surprised me. It became evident that these people were manifesting a grieving process. This left me confused. It was clear that they were alternately anxious, angry, denying, guilty, depressed or fearful, but they were not internally "disturbed" people. Conversations focused on experiencing regrets, being overwhelmed, and other feeling common to people who are bereaved. My puzzlement: "Who died?" At that time, my understanding of grief was simple, concrete, and exclusively tied to death.
What followed was a remarkable process. The group members struggled with a number of concepts that led us all to some powerful contemplations about parental grief. Is it the loss of a "normal" child? Is it the disruption of one's "normal" lifestyle? Is it the sense of shame or humiliation that is experienced with family, friends, or other peers? Is it the profound disappointment that some experienced with the ineffective responses of their ostensible support group? We might have shared such thoughts endlessly, until I formulated a key question that helped to bring these diffused feelings and thoughts into focus. It came out innocently enough: "Think back to when you were anticipating the birth of your child. Who (or what) was this child to have been for you? What followed was a remarkable outpouring of poignant, anguished human sharing that, to this day, serves as the foundation for understanding and working with parents of impaired children.
Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heartfelt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on ones ability to separate from the lost dream, and to generate new, more attainable, dreams.
As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.
Grieving is an unlearned, spontaneous, and self-sufficient process. It consists of states of feeling that provide the opportunity for self-examination, leading to both internal and external change. The grieving states that facilitate separation from a lost dream are as follows: denial, anxiety, fear, guilt, depression, and anger. The word "states" is used instead of "stages," to emphasize grieving is not a step-by-step process that evolves through discrete stages. This depiction of what a parent goes through is a presentation of theory, not irrefutable fact. It is meant to help people find their own ways of dealing with the unspeakable. I look at it as a map, not a recipe. A recipe tells people what to do if they desire a particular result. A map, on the other hand, is one person's partial impression of reality that can be used by another to help them get to where they wish to go.
When theories of grieving are used as a recipe to produce acceptance, two false premises are inflicted on parents. The premise that grieving should move through a specific order is flatly inaccurate. A consistent pattern is not evident in people dealing with loss! Worse, when people believe that they are supposed to grieve in a certain way, they often end up thinking they are doing it wrong. Secondly, the concept of acceptance is totally unfounded. In almost twenty years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgement. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it. Any use of grieving theory as a recipe is strongly discouraged.
Though the feeling states of grieving do not adhere to any strict order, there is a loose pattern that can be detected. Denial is always first, but may reemerge again and again, as often as the parent needs to experience it. Anxiety generally follows denial, but it can follow other feeling states as well. It is not uncommon for two or more feeling states to be experienced at the same time. Different families are more or less comfortable with showing certain feelings while discouraging others. In short, each person who goes through the grieving process experiences each of the feeling states, but does so in their own unique manner and order.
It is clear that this spontaneous, unlearned grieving process is central to the well-being of the child and parent alike. It is the only way that one can separate from a lost cherished dream. Many people do not make it. They have their dreams shattered by disability and collapse emotionally under the assault. Resisting the grieving process, they hold feelings in, blame self or others, become embittered, dependent, or even bizarre in their interactions. They can range from the selfless crusader to the deserter, from the alcoholic to the workaholic, from the outrageously high strung to the person who barely moves or talks. However they manifest their stuckness, these are the people who have become worse, not better, in response to loss. These are the people who could not or would not experience the feelings of grieving. Many of them resisted the process because their subculture (their family, neighbors, church, schools, and friends) sent out a consistent message: the feelings of grieving are not acceptable! Others foundered because they were stuck emotionally before they had their impaired child. Regardless of background, people become worse if they resist experiencing and sharing the spontaneous feelings of grieving. Each feeling state, no matter how negative, serves a specific and helpful function. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression and anger in whatever order or manner the feelings surface.
The Feeling States of Grieving
People who deny are considered stupid, obstructionists, dull or deliberately irritating by many who have to deal with them. None of that is true. Parents of impaired children manifest denial as a normal course of trying to deal completely with loss. It is impossible to live life fully while maintaining an awareness of the awful things that can happen to people. Most people routinely shield themselves with such thoughts as "The terrible things that happen to other people can't happen to me, because... 11 This system works fine as long as nothing terrible happens, but when it does, no one is prepared to deal with it. This is where denial in the service of grieving comes in. Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.
When a person loses a dream that is central to their being, they are forced to make major changes within themselves and within their environment. To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values, and beliefs, as well as altering day-to-day routines. Such changes require a great deal of energy. Anxiety mobilizes the energy needed to make these changes. Further, it gives focus to that energy so that the changes can be actualized. Anxiety is the inner source of the need to act.
Anxiety is generally seen as hysterical, inappropriate, and unacceptable. The culture's message is clear. As a rule we advise anxious people to "calm down," to take medication, or to use alcohol as a "solution" for the "problem" of anxiety. These unsolutions keep the parent from changing and often make things worse for all concerned. Realities must be faced, stressful as they might be. It does not take long for most parents to become aware that they, not some professional, are their child's medical, educational, and therapy managers, even though they may have minimal knowledge of these areas. That alone should drive home the urgent need for energies to be mobilized and focused by the crucial feeling of anxiety.
As anxiety mobilizes people to deal with change, fear is a warning that alerts the person to the seriousness of the internal changes that are demanded. One's sense of balance and order are dramatically challenged when one confronts a meaningful loss. The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult.
Significant losses produce a profound sense of abandonment and vulnerability. We have a number of sayings to cope with this level of fear, e.g., "It is far better to have loved and lost, than to have never loved at all." Each person must find their own words to confront the sense of abandonment and vulnerability generated by a significant loss. Most parents experience the fear of vulnerability about having more children after they have had an impaired child, or about "over-protectionism," the gut-wrenching fear of permitting their impaired child to do anything that feels risky. Given the ways that this part of grieving is manifest, it should not be difficult to see that fear is the medium that encourages the struggle to reattach, to love again in the face of a loss.
Parents of impaired children manifest guilt through the normal course of grieving and are often criticized for doing so. Guilt is a feeling state that has become so identified with being neurotic that people feel guilty about feeling guilty. Since sharing such feeling often evokes negative judgments, it can be difficult for a sophisticated parent to talk about guilt freely. On the surface, guilt-ridden people may appear not only neurotic, but superstitious, ignorant and primitive. They are often viewed as unpleasant, uncomfortable people to be with and therefore are dismissed or treated harshly by friends, family, and professionals.
Generally, parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child's handicap. Their story is often accurate and, on the whole, persuasive. The current emphasis on the prevention of birth defects has brought many parents to feel that they caused their child's impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child's impairment is punished for a past inappropriate thought, feeling, or action. One of the more common "guilt thoughts" is regretting the pregnancy sometime during gestation. When something goes wrong after that thought occurs, "it's all my fault" becomes a natural outcome. Lastly, guilt can be expressed through the parent's belief that good things happen to good people, and bad things happen to bad people. Because parents have an impaired child, they must be bad people. Because they have an impaired child, they must be bad people and consequently feel shame and guilt. How can such painful explanations of tragedy be useful to bereaved individuals? Simply by being explanations. Guilt "explains" the unexplainable.
Human beings began to question the "why" of things from very early on in their lives. What are the rules which govern the way of things: cause and effect as well as right and wrong? A most important "why" concerns how one's "right" or "wrong" actions effect one's life. What difference does it make that a person is moral, ethical, legal, caring, ambitious? How is it that one does or does not influence the events of one's life? Some of us found early and easy answers to these questions and have not considered them since. After a loss, such questions cannot be answered in an ordinary fashion. Rather, they must be addressed through the kind of grief-related struggles addressed here. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life are deeply shaken. The order of things is totally upset when an innocent child suffers. The parent experiences deep pain, pain that can be used to reorder the rightness of the world. Guilt is the feeling state that facilitates this struggle to reorder. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything! Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.
A common response to loss often is characterized by profound and painful sobbing. Parents report that at times it feels as though the tears will never stop. There is a rest, but then for no apparent reason, waves of despair and anguish wash over the parent once more. Between the tears, one can sit alone, staring silently. Those periods of silence can last well beyond the periods of tears. The thoughts of depression take over, thoughts like: "What's the use of trying, it's all over,," or "Nothing I do matters, because nothing will change what has happened to my child!" Depression is subtly rejected and judged as pathological by much of our culture. When people display such feelings, they are often told to "cheer up", given medication, or offered distractions. Such responses are inappropriate, for depression is part of normal, necessary, and growthful grieving. It attends to another aspect of a basic human struggle that loss stirs.
As we mature, we develop and modify our definitions of the following words: competence, capability, value, and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are OK or not. What criteria does a person have to meet to feel like a competent parent, a capable worker, a valued friend, or a strong person? Each person determines these standards privately, even secretly. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value, and potency usually no longer apply. How does a mother feel competent when she has a retarded daughter? She can't use the measures of her peers, like having a daughter graduate from college, or become homecoming queen. What is the worth of a father who cannot "fix" what is broken in his impaired son? Out of this struggle of defining one's worth come the frightening feelings of helplessness, hopelessness, and haplessness. Faced with loss, a parent feels unable to act effectively (helpless), unable to imagine that things will ever get better (hopelessness), and unable to believe that their lives are touched by good luck (hapless).
Such feelings are terrifying for both the parents and those around them. For that reason, it is hard to see that depression is a normal and necessary part of the grieving process. Depression is the medium that helps parents come to new definitions of what it takes to be a competent, capable, valuable and strong people, even though their child has impairments that they cannot cure.
Anger, for many people, is the most disconcerting of the feeling states. It too is a natural and necessary part of the grieving process. Parents feel anger at the harm done to their child and the shattering of their dreams. When one encounters a significant loss, it is likely that one's internal sense of justice is severely challenged. To continue to trust in the world, one must have a sense of justice that confirms an orderliness and fairness to the way the world works.
A parent can righteously demand to know why he or she has an impaired child: "Why me, why not you!" Implicit in the question is the notion that there must be good reason that such a thing happens to one parent and not to another. A parents'concept of justice, like value and worth, is another unique product of that individual's thinking and development. When confronted with the traumatic loss of a dream, that internal sense of justice is violated. Crying out in the face of injustice, the parent develops new ways to look at justice in the world. "What, after all, is fair, if this can happen?" Anger is the medium through which a parent redefines fairness and justice. It integrates new beliefs within the deepest emotional levels of the grieving parent.
Unfortunately, anger is an emotion that is actively rejected by the culture at large and by people closest to the parent. The angry parent experiences rejection by others, confusion about feeling anger and acting out the feeling, the feeling of being out of control. All of this makes it very difficult for this important feeling to run its course.
Anger also poses other dilemmas. Unlike the other feeling states of grieving, anger is directed toward someone or something. Who (or what) is the object of parental anger? This question deeply distresses most parents, because the honest answer is often so troubling that many people avoid asking themselves the question. The unacceptable answer, of course, is that the impaired child is the object of anger. After all, who has entered this parent's life, disrupted it, caused immeasurable pain, and drained the parent's time, energy, and money.
Most parents were raised to believe that feeling and expressing negative feelings about one's child is taboo. "The child never asked to be handicapped, let alone to be born. How can one be reasonably angry at this child?" If the child is blameless, than it must be unreasonable to feel anger toward the child-even though one does! The conflict between what parents feel and what they can permit themselves to express can cause a return to denial. Another outcome of this conflict is that the parent can displace the anger onto others. Spouses, non-impaired siblings of the impaired child, and professionals are all possible targets of this displaced anger.
When considering the feeling states of grieving, especially the feeling state of anger, logic and reason are irrelevant. Where is the logic behind cursing a rug that one has just tripped on? What is the purpose of kicking a flat tire? What good does it do to admonish anyone after they have already done the wrong thing? Expressing simple anger clears the way to getting on with the task at hand. Expressing anger opens the way to address the meaning of justice (though enacting angry behavior sidetracks the parent from the task at hand). While there is no logic, there is purpose and function to the expression of angry feelings. As events occur that violate one's sense of justice, the outrage must be expressed. Those expressions help to redefine one's concepts of fairness and justice.
The parent of an impaired child separates from dreams that were shattered by impairment through grieving. Denial, anxiety, fear, depression, guilt, and anger all emerge. If they are shared with other people, these feelings help parents grow and benefit from what might be the worst tragedy of their lives. Grief must be shared deeply and fully until the underlying issues are revealed. The reopening of these issues changes the parent's world view. New perceptions of themselves and their world serve as a solid foundation for coping with the disability and for personal growth. Yielding to the grieving process helps parents find the inner strength and external support needed to face profound loss; to mobilize and focus the energies needed to change their lives; to reattach to new dreams and loves in spite of feeling abandoned and vulnerable; to redefine their criteria for competence, capability, value, and potency; to reassess their sense of significance, responsibility, and impact upon the world around them; and to develop new beliefs about the universal justice system that makes the world a tolerable place to live, even though terrible losses can occur. The culturally rejected feeling states of denial, anxiety, fear, depression, guilt, and anger may be used in surprisingly positive ways when the feelings are fully shared. Perhaps you can see now why I think that experiencing and sharing the pain is the solution, not the problem. Through my life I have experienced many losses. For many years I dealt with these losses by stifling feelings, workaholism, toughing-it-out, and innumerable other ways that kept me from experiencing what had happened to me. I became one of the "walking wounded" that I was committed to helping. Ironically, it was not until I myself had a child with impairments that I began to take the advice that I had so freely given to other parents. I started to yield to the natural and necessary process of grieving. Like everyone else, I discovered that only now am I growing with the impact of the loss. I will continue to grieve and to grow as my child and I develop and experience new losses and new strengths.
Posted by Melanie at 10:01 PM
Friday, May 11, 2007
Daniel has a new label to add to his on going list. This one is a little more common then his others but none the less, its another one. Of course this one goes along with , undeniably cute, irrestible, funny, and happy go lucky.
Here is a little blurb on CP for those who aren't familiar with it:
Let me first start off my putting a disclaimer out there, Daniel does NOT have brain damage due to a birthing issue, Daniel has a brain malformation. His CP is not the cause of anyone's fault or negligence. It is a BIRTH DEFECT.
Cerebral Palsy Diagnosis
How is the Diagnosis of Cerebral Palsy Made? When an infant or child has brain damage, a variety of symptoms can lead doctors and parents to suspect that something is wrong. In the first few months of life, an infant with brain damage may demonstrate some or all of the following symptoms:
Lethargy, or lack of alertness
Irritability or fussiness
Abnormal, high-pitched cry
Trembling of the arms and legs
Poor feeding abilities secondary to problems sucking and swallowing
Low muscle tone
Abnormal posture, such as the child favoring one side of their body
Seizures, staring spells, eye fluttering, body twitching
During the first six months of life, other signs of brain injury may also appear in an infants muscle tone and posture. These signs include:
Muscle tone may change gradually from low tone to high tone; a baby may go from floppy to very stiff.
The child may hold his or her hand in tight fists.
There may be asymmetries of movement, that is, one side of the body may move more easily and freely than the other side.
The infant may feed poorly, with their tongue pushing food out of their mouth forcefully.
Once a baby with brain damage reaches six months of age, it usually becomes quite apparent that he or she is picking up movement skills slower than normal. Infants with cerebral palsy are more often slow to reach certain developmental milestones, such as rolling over, sitting up, crawling, walking and talking. Parents are more likely to notice these developmental delays and abnormal behaviors, especially if this is not their first child. Sometimes when they express their concerns to their physicians, their child is immediately diagnosed as having cerebral palsy. More often, however, medical professionals hesitate to use the term "cerebral palsy"at first. Instead, they may use broader terms such as:
Developmental delay, which means that a child is slower than normal to develop movement skills such as rolling over and sitting up
Neuromotor dysfunction, or delay in the maturation of the nervous system
Motor disability, indicating a long term movement problem
Central nervous system dysfunction, which is a general term to indicate the brain's improper functioning
Static encephalopathy, meaning abnormal brain function that is not getting worse.
So why do doctors frequently delay making a final diagnosis and prognosis when a child may have cerebral palsy? Part of the answer lies in the plasticity of a child's central nervous system, or it's ability to recover completely or partially after an injury occurs. The brains of very young children have a much greater capacity to repair themselves than do adult brains. If a brain injury occurs early, the undamaged areas of a child's brain can sometimes take over some of the functions of the damaged areas. Although the child may have some motor impairment, he or she can often make great progress in other motor skills. Another reason doctors may delay a diagnosis of cerebral palsy is that a child's nervous system organizes over time. Damage to the brain may affect your child's motor abilities differently. For example, tone can go from low to high or vise versa, or involuntary movements can become more obvious. Generally, however, a child's motor symptoms stabilize by two to three years of age. After this age, tone is probably not going to change dramatically. So what does all of this mean? It means that a cerebral palsy diagnosis is not made over night. Since the extent of your child's problems will probably not be clear for some time, his or her symptoms need to be monitored by an interdisciplinary team. This is a group of professionals with specialties in different areas. These health care professionals gather information on the child's accomplishments and make comparisons over the months and years of the child's life. They will keep you up to date on your child's current needs and problems, as well as the medical reasons for these problems, if known. When diagnosing cerebral palsy, the interdisciplinary team must first conduct an assessment, or evaluation of the child's strengths and needs in all areas. As your child grows older, additional assessments may be necessary. In conclusion, cerebral palsy is diagnosed by a complete examination of your child's current health status. Doctors will test your child's motor skills and look carefully at his or her medical history. They will also look for slow development, abnormal muscle tone, and unusual posture. When diagnosing cerebral palsy, doctors must rule out other disorders that can cause abnormal movements. Cerebral palsy does not get worse, in other words, it is not progressive. Based on this fact, doctors must make the determination that your child's condition is not progressively getting worse. Doctors will also use a number of different specialized tests in diagnosing cerebral palsy. For example, the doctor may order a CT (computed tomography). This is an imaging of the brain that can determine underdeveloped areas of brain tissue. The doctor may also order an MRI (magnetic resonance imaging). This test also generates a picture of the brain to determine areas that may be damaged. In addition to these imaging tests, intelligence testing is also used. This helps to determine if a child is behind from a mental standpoint. In addition to diagnosing cerebral palsy through a complete and thorough examination of the child's abnormalities and behaviors, a review of the mother's pregnancy, labor and delivery and care received is also conducted
Posted by Melanie at 5:37 PM
- He is opening and holding on for support with his hands
- He can sit unsupported for 20-30 seconds
- He can build "a bridge" with his body, and does it when I ask himHe will wipe up his snacking spot when I give him his wash clothe! (He even washed off his pretzel today!
- He is started to get the rocking motion to roll over from back to tummy
- He raises his arms above his head--straight. Never did this before
- And finally....he is shaking his head side to side to say no.
Like I have always said, I have a smart little boy in that head...we just need to find alternative ways to get his body to listen to him. I can see him process it (see the gears working in there) when I ask him to do something, he will look at me for a few seconds, smile and then kind of just "concentrate" and if you wait, a little longer then you think you should need too, voila!! Daniel does it! His brain knows it, his brain is SCREAMING to him arms and legs, hands whatever part, and I know if we could here it, it would go something like this "OK, you Mr. Left hand, open up, Now, Mr. Left arm, and elbow...stretch, OK now hand, close your fingers, there you go there you go, now look up and smile, that's it, a great big smile! Good job guys YOU DID IT!!" If you think about it, its gotta be hard to get all those things working. Very exhausting!
And believe me Daniel knows, he knows when he does something, you can see the look of accomplishment, the satisfaction of succeeding. He knows he got done what he needed to, it might have taken twice as long, but damn it...........he did it. And I love him so much for doing it, for trying. this kid...he's got drive, he's got determination, and he's got a big heart, he is what keeps me going......although aside for a few meltdowns, he keeps me on track!
Posted by Melanie at 2:51 PM
Wednesday, May 9, 2007
Posted by Melanie at 7:18 PM
Tuesday, May 8, 2007
Day Two went better during the school part, afterwards its mom that has the mental break downs and while Daniel is napping, I am crying (more like sobbing) quietly so no one who might walk down the hall will hear me!
This whole process is very overwhelming, nothing that I ever imagined. It is hard for Daniel but he seems to be handling it fairly well. He is happy to be in the class with Maeve and Gramm. It is me, who is having the problems. Daniel seems to do ok but I really think he misses people. I would say "Lets call Daddy, and he would be all bouncy and happy." and when we go to bed he is constantly looking around for Lonnie.
I love the classes, the whole thing so far. I can't stand being away and by myself with no one to share the little accomplishments, and no shoulder to cry on. And whether I am just super emotional, or whatever. I am losing it. I will try to explain. I guess all the way along I knew in my head that Daniel would be "different" have some issues. Ok, well when you're at home, in an area you're familar with, you can kind of just forget that he is different, that he'll need help. Here........it seems like its just all shoved in your face. EVERYONE here is handicapped. I don't like that, not that handicapped people bother me, not at all, its just the overwhelming (I keep using that word because I can't think of another one to use that expresses the feeling) sadness, or sudden acceptance (not really accepting) that HEY YOU DIPCHIT, get with the program, your child is ALWAYS going to be treated differently. I'm not, or can't explain it. Like at nights at the house........(now mind you I LIKE the house, it is wonderful and I will go more into the house in a later post) its the fact that the parents are all sitting around talking about their child like they are some "thing" and not a child. One mother was sitting there saying what a pain in the butt it was to do this or that and how heavy this child was getting, how she isn't able to do anything like she wants anymore because she has "X" and the child was SITTING RIGHT THERE!! Come on man.....I wanted to tell her to shut up, fine if you want to talk like that when he isn't around but he is listening to you. He can hear you, his hearing is fine he has CP.....he's not dumb and he's not deaf.
Now, about the school. Wonderful, wonderful conductors there, the people who are working there are wonderful. They treat us great Part of the class so far is first the standing portion, the stretching. Here are a couple of pictures with Daniel (SITTING BY HIMSELF) at the table with no support from anyone.
Then we also have Daniel learning to balance on the potty chair. Not necessarily to potty train him but just to get him to balance and hold on. He even went POTTY!! Yipee for Daniel.
There is such a look of joy on his face when he does something that they are teaching him. He's like "Hey, hey, hey, look over here....did you see that?? I DID IT!!"
There is still the fear that he has of laying on his back on the slatted table top. This is the only part of the program so far that he will cry at. I don't know if he gets the sense that he is going to fall off, or if he thinks he is at the doctors office or what.... lay him on his back on that table and plug your ears.... he DOES NOT like that, and it takes about 5 minutes for the boo-boo lip to go away. Now on his tummy he doesn't care.. here is a picture of Daniel and Maeve stretching their arms and using head control. (Maeve has the exact same thing as Daniel, but without seizures)
And this is Daniel within minutes of leaving school.
Posted by Melanie at 9:07 AM
Monday, May 7, 2007
We actually got here yesterday at around 2 p.m. After about a 2 1/2 hour drive, which wasn't too bad because Brittany and Tori were there to entertain us on the way. Lonnie followed in the other car, and the girls ended up driving home with him around 7 p.m.
I didn't realize how lonely it would get with just me and Daniel. I mean I'm with Daniel every day so why would being here be any different? Oh but it is, today (Monday) not even a full 24 hours alone and I'm in tears. I suppose that is on top of going to CLC today. Which by the way went good, aside from the crying episodes that everyone in the class went through. Plus.....this time I'm just emotional. I wanted to cry during the class. It is so sad to see these little babies with these horrible things wrong with them. It's not their fault and it just plain sucks to see them have to struggle to just do the normal things in life. It just rips my heart out, not just Daniel, but the other two in the class also. They were all smiles and happy little babies, and they have to do all this crap and be away from their families and who they are comfortable around, and they have to work so hard. It just sucks.
Ok lets start with the Ronald McDonald House. It is very nice here. The people seem very cool. There are a total of 7 families that are here for CLC, the rest are for other children's hospitals and things in the area. I have only met a few of the CLC families so far abut I do know that Daniel is the youngest one in the house. We met Joseph (8 yrs old from PA), Alyssa (9 yrs old from Canada) and her sister Victoria (who is just tagging along). Our room is on the small side but of course it is just Daniel and I, and we have our own bathroom. Thank goodness we aren't here in the middle of summer because there is no air conditioning!! LOL. We have one small window but I am closing it at night as it is off the front porch. I was smart, we brought a fan just because I like the sound of it at night.
There are rules at the Ronald House, no food out of the kitchen area....this tends to stink, also no beverage unless you have bottled water. NOTHING ELSE!! If you know me, you know I like my diet coke, and we will let it be known that right now, as we speak I am going through withdrawals!!
Conductive Learning Center: Well I managed to find it driving on my own. Although if I wanted there is a shuttle that the RMD house provides people who are staying here. They will take you where ever you need to go. They have everything here, food in the pantry (don't have to go out) they have the car seats, highchairs, you name it they have it for you. Anyways, back to CLC. Our teacher is Hungarian and is difficult to understand but Daniel thinks she is funny so I guess that is all that matters. She told us her name but for the life of me I can't remember how to pronounce it. I do know it translates into Georgia. There was a student also there to help from the Aquinas College named Liz. There are 3 children including Daniel in the class. One child, Gramm, had spina bifida. Then there is a little girl who is 13 mos old who has the exact same thing as Daniel (BPP) but has never had the seizures. Of course like the doctors say each child is different that has this. She is here from Mass. she is also tagged with the diagnosis of CP (Quad). It is sad, but then again it is comforting to know that there are others out there like Daniel. Gramm can walk with his walker. Actually Daniel is the only newbie in the class as the other ones have been there before and said that they see a lot of results.
It is very much like a class setting. We practiced with the standing and then pulling with our arms to pull our bodies along. Also pushing away from a table, and walking with the aid of the slatted chair. Then they also put each child on his/her own potty. Not necessarily to potty train them, although it does help, but also to teach them to balance on the potty and to learn to stand up from the potty. Although Daniel didn't go potty, he did like sitting there and playing with the bubbles! Then they had snack time and practiced feeding themselves. I will have to say I felt like a horrible parent because I haven't taught Daniel these types of things. To be self sufficient. I have been doing all this stuff for him, but practicing the types of therapy that we do at home. Then we did some crawling and pulling themselves up on the backs of chairs. Hard work! Kills my back I'll tell you that much.
Anyways that is it for the first day, trying to get out of my slump and stop the emotions. Very lonely, very scary, very everything. Most families here know each other and have come with their families. Daniel and I.....we have to stick it out, and hopefully it will pay off.
Posted by Melanie at 2:05 PM
Thursday, May 3, 2007
Lets see what has been happening?!
Victoria left for a week to Washington D.C. on a school field trip. Excuse me? when I was growing up we went to the zoo......what the heck!
Daniel got his TheraTogs. He didn't much like getting them fitted, but once we got them all on he was fit as a fiddle and doesn't mind wearing them at all. I suspect that during the summer he won't like them too much. Seems that they will get very hot, and make him sweaty.
Here are a few pictures of Daniel with his TheraTogs on. We can't decide whether to call him "Super Velcro Boy", or "Super Baby". In all his garb, he reminds me of a super hero.
The reason for TheraTogs? It helps with improving his trunk stability and control, posture and balance. TheraTogs are like a second skin, they fit snug against the skin. They act as a "second-pair of hands" for the therapists. The TheraTogs are made of a stretchy fabric, velcro and elastic straps. The provide vertical stiffness to reinforce stability and lateral flexibility with mild compression.
Also, last week Daniel also got his electro machine...this gives him shocks through his muscles (which ever ones we put the electrodes on) this helps him to become more aware of his muscles and strengthens them. We haven't used it much this past week because of the seizure that we believe he had. But we will start it back up again next week.
On Saturday, Daniel will be admitted into the hospital AGAIN for this 4th 24hr video EEG in a little over a year. I don't mind the test as much as I HATE, let me repeat, HATE that he has to be tied down to a bed for approximately 45 minutes screaming because he is scared and doesn't remember what the hell is going on. And oh did I mention that NONE of the technicians show any sense of urgency to get the process done quickly. NOPE they sit there and try to carry on a conversation with you like there isn't a little boy strapped to a bed screaming his head off, can't catch his breath, and is scared. HURRY UP YOU ASSMUNCH! HA HA HA listen to me, I'm acting like it just happened and it hasn't even happened YET. I guess past experience is rearing its ugly little head.
Sunday.......we're off the Grand Rapids Conductive Learning Center.......stay tuned for daily updates with pictures and all!