Tonight I read an article on how not to say something wrong to a person in a crisis, it was a one size fits all approach that quite frankly left a bitter taste in my mouth. Over the years I have got quite sick of people pretending to speak for all of us, like we are all cut from the same cloth and should all be treated the same or offended by the same thing. Just like each one of us is a unique human being so our the situations we land in, what works for one person may not work for another. Yes people can be jerks sometimes but, personally, I rather deal with a few jerks then have everyone walk on egg shells afraid to offend me.
Have you visited my child in the hospital or while he's ill and can't handle the emotional impact it has on you? Go ahead and tell me, I will understand, and I certainly wont be offended. Do you know what would bother me? Saying nothing to me, dumping on someone else, and vanishing from sight until things are better. For me that shows you don't care, that you rather talk behind my back and aren't truly there to support us. If you tell me you can not handle something or something is too emotional for you I can reassure you, I can walk you through what's what and hopefully not make things so scary, however, if you don't talk to me I can't help you and chances are you will no longer be there to help me.
Keeping a good and strong support system can be an uphill battle at times, people can become so worried about offending you that they rather leave your inner circle then potentially say something wrong. Keeping the lines of communication open and making it a two-way street instead of always expecting the person to only listen to you unload can relieve some of the tension and bring about a stronger understand of the whole situation. Before you boarded the boat you were on how much did you know about the crisis you are facing? Most likely very little. How did you react the first time you came face to face with a serious medical crisis? Did you go into it and not feel a sense of shock, fear, or even anger? Most likely you did. So don't expect your support group not to feel those same feelings, if they truly can not handle it, do no be offended, some people just aren't made to be able to handle that situation.
Do you have advice? Have you been in a similar situation or worse? Some people may not want to hear it, but others do, there is nothing like the feeling of the world closing in on you, the floor dropping out from under your feet, and feeling like you are alone. It can become even worse if you find yourself or your child facing a grim prognosis, so if you can tell me about someone just like me, or my child, who went through something similar or worse and had a positive outcome TELL ME! I want to see that there is hope, that a poor prognosis doesn't mean the end of the world, that miracles do happen.
Want to lighten the mood and crack a joke? Laughter is the best medicine. My dad and I had a very close relationship and when he was dxed with pancreatic cancer we use to joke that he looked like dog pee on snow. The gasps we used to get from outsiders was hilarious, THEY were offended and because THEY were offended we should stop because "it's not funny", sorry but I have news for you, it was! When he relapsed and his tumor made him look like he was 9 months pregnant with twins he'd clutch his lower back and say "these kids better be worth it", he kept a smile on his face and joked around no matter how much pain he was in until the day he slipped into a coma. His battle was made so much easier by us being able to find a little humour in it all, we knew he was dying, we knew he wouldn't recover, we knew there was no miracle to be had for him, so why dwell on the bad? Why not make the most of the time you have left? My dad told me "I don't want to be treated like that pitiful dying person, I want to be treated like I would if I wasn't ill, I don't want my last days spent being pitied by others and I don't want them to sugar coat things and lie. I look like shit, don't tell me I look great, don't tell me everything will be okay, it wont be." Find the light in the dark, make memories that will last a lifetime, don't dwell on the bad. (RIP dad)
At the end of the day you know what is right for you and your family, if you don't like something, say so, if you have boundaries you don't want crossed, tell your support system. Your support system only functions as well as you allow them to, clear away the egg shells for them, tell them what your needs and wants are, they are not mind readers. The easier you make things for everyone, the easier it will be to find support when you need it. If someone does cross the line, don't talk about the issue behind their backs, tell them! Give them a chance to apologize, tell they why you thought it was out of line, and try not to hold grudges, chances are you've also been guilty of saying the wrong thing before so give them a chance to redeem themselves. If they continue to be insensitive weed the poisonous people out of your inner circle, they didn't belong there to begin with, but don't allow one slip up destroy your network. Networks get smaller over time due to many reasons so the last thing you want to do is alienate people that may be there for the long haul over one perceived insult or insensitive comment.
Tuesday, April 9, 2013
Wednesday, January 9, 2013
Keeping it together
When your child is diagnosis with a disability, disease, defect, or is born prematurely you are often overloaded with information and a lot of it you need to remember. There is also a lot of things you would THINK other doctors and specialists know, but they don't, and in times of emergencies some important details may slip your mind. For instance if they have a mix of major and minor issues you may rattle off them all, or so you think, and miss something that had your head been clearer you would have. You may also cover everything and the person writing it down misses something important. Your child may have been on numerous medications over the years and when asked "what all has he taken?" miss some, and believe me when the list is longer than your arm it's going to happen.
What can you do to make things easier for yourself and any doctors and specialists you deal with? You create your child's medical bible!
Things you will need:
1. A good binder, one with pockets on the inside and if you wish a clear pouch on the outside.
2. Dividers: how many depends on how many sections you feel you need. you can even make your own by getting a heavy stock paper and the stick on tabs.
3. A pen, Sharpie marker (or any fine tipped permanent marker), and at least one highlighter.
4, A package of the stickers that say "HELLO" or "ALERT" in red across the top and have writing space below. (red is the comment colour used to draw attention to something important so they must be red, if you can't find any get the white sticker and with a red marker make a BOLD outline around it)
5. A hole punch
6. A computer, printer, and some quiet time! =) if you can get it!
OPTIONAL:
6. Page protectors: though these seem great and I do use a few they do block the dividers!
7. Large envelope
8. Any medical records/information you currently have.
First off take those "hello" stickers, you want one for allergies and one for medications, write that on the top of each and highlight it. Now write what meds they are on, what the doses are, and when they get them, you can use as many as you need. On the second one write down their allergies and reactions. Now take them and stick them to the BOTTOM of the front cover of your binder.
Now that you have moved to the binder turn it and take your sharpie and write your child's full name on the spine and even their birthday if you wish. Do the same at the TOP of the front cover but not too large, now this next part you can either do on your computer, print it off, and stick it in that CLEAR front pocket or you can write it directly onto the cover (which is what I did). List ALL their diagnoses, one under each other, from most important to least. Yes I know they are all important but think of the ones that take priority over another or ones that tie into each other, put the one that may make things more complicated first. For instance my son has asthma but also has chronic inflammation of the lungs with chronic infiltrates and asthma-like symptoms (all this means is it can present like asthma attacks but treating with asthma meds will NOT work) I list his lung disease FIRST that way they need to read it before they move on to asthma. If asthma was listed first they may not read any further due to his presentation and automatically assume standard asthma treatments will do the trick.
Once you have finished that take your dividers and write on the edges the categories listed below, you do not have to use them all and can even add your own, do what fits your circumstances best! Once you are done add them to your binder and you are ready to begin adding things to it, if you chose to get an envelope glue it to the inside of the back cover or stick it in one of the pockets, be warned though that not gluing it means you are more likely to loose it (this will be used to store receipts, cards, or anything else you find important until you can put them away properly, which I advise you to do!)
-Personal Information
-Medical History and Alleries
-Childhood Illnesses and Immunizations
-Medical Team
-Equipment and Supplies
-Care Log (aka appointments & hospital stays)
-Bloodwork and Test Results
-Medications
-Assessment Reports
-Therapy/Schooling
-Resources/Funding
If your child is old enough have them decorate a few pages to put at the front of the binder (before any dividers) and add a few blank pages or coloring sheets for them to color on later (like while in hospital), glue family photos of good times to stock or construction paper and add them in too. Not only does this personalize the binder but it gives your child something to look at while away from family. It also allows anyone you are dealing with to see what your child and family is like when your child is not ill, they are no longer just a sick child, they are a child who loves the swings or has a blast with his family.
Now the headings are pretty straight forward but I will still go into more details on them.
Personal Information: Include your child's name, age, birthday, insurance numbers and anything else that is important. Also include who their siblings are and who you are, even include a picture beside each name so they can put a face to the name. Add in your contact information, their primary care teams information, emergency contacts and number of relative they may want to call while they are in hospital (put in a signed waiver saying it's ok for you child to call them). That way if you are not there and they want to talk to grandma they, or staff, can call them so they can talk. Also include their likes, dislikes, and a copy of their routine, for example is there a special way they take their medications? is there a blanket or toy they need to have when they fall asleep? is there a special song you sing to calm them down? if so include the lyrics and if possible name a common tune it's sung to.
Medical History and Allergies: Make sure the name of the allergy and type of reaction are in BOLD letters, you can even make them red to highlight them more. Include all their medical history here and if they have a rare or uncommon condition print off information about it but make the first page of it highlight the key aspects of it. For instance my son has a rare form of epilepsy with some unusual seizures so we highlight what seizures he has and in the information we provided we highlight (with the highlighter) the information we said was important so they know where to read if they only want a brief overview.
Childhood illnesses and Immunizations: Include a copy of your child's immunizations, if you don't immunize say so, and if there is a medical reason for it tell them what it is (eg allergy, bad reaction, etc). Also include a list of childhood illnesses they've had, and no I'm not talking every cold/flu, focus on the important ones. For instance my son has suffered from repeated iGAS infections and cellulitis, those need too be know. List things like chicken pox, whooping cough, NEC, RSV, and other illnesses you think are important to know about. Include the date, or approximate date if you can't remember, treatment received, if there was a hospital admission or ER visit etc.
Medical Team: Do a few pages, if needed, do one for doctors/specialists/clinics, nurses, therapists etc when you list each include all the contact information you have for them. You want phone numbers, pager numbers, addresses, which hospital(s) they work out of or program they are part of, and even e-mail addresses if you have them. You can even split it as specialists and community supports, do whatever you feel is best for you but try to include everyone and include clinic days (if they have set ones) and how often you see each of them, if your child has been discharged from their services indicate that but keep them in your file. This way if months or years down the road you need their services again you have the information needed to contact them or have new referrals sent to them.
Equipment and Supplies: Include the name of the equipment and/or supply, any identification number on it, where you got it from, their contact information, and what it is used for. If they are supplies that you order regularly add in how often you reorder or the date you usually do. If you have any warranty papers or manuals you can also add them to this section or a reminder of where you put them.
Care Log: This is where you list ALL your appointments, ER visits, hospital admission, surgeries, procedures etc. include date (and time if you wish), the reason for it, the outcome (meds etc), and when to expect a follow-up. Also include the doctor's name, hospital, and any contact information you may need. You can also take notes from these appointments and put them in as well, this way you can go back on them later and see if you have additional questions you may want to ask (and yes I suggest you take notes during appointments, especially if they are making changes to something or giving you new information or a new diagnosis!). Also keep any medical records you have here (or alternatively under Medical History), separate them by clinic and/or doctor. This is actually where I use the paper protectors in our binder, each page protector has the name of the clinic that the enclosed records are from and they are in alphabetical order, in front of them all is a print out with a table of contents so they know exactly what is in this section.
Bloodwork and Test Results: Include copies of any and all tests results you have, even if you have to pen them onto a piece of paper. Include labs, x-rays, ultrasounds, etc, even if you don't have the results keep a log as to what was done and when, it can come in very helpful.
Medications: Include two or more sections, one for prescription, over the counter meds, and other things they are given on a regular basis that may interfere with medications they may be prescribed (like vitamins, herbs, etc). With each you want to list what it is that was given, the dose, how often it's given, start and end dates, who prescribed it, and why it was prescribed.
Assessments and Reports: Have they had a feeding study? did the doctor do a developmental assessment? put the reports in here, put anything in here that doesn't all under the next category.
Therapy and Schooling: Keep records of everything, therapy reports, report cards, school/therapist assessments, their education plan (known as an IEP here) and a copy of anything you gave the school about their medical history and treatment protocols. This is an asset! This way if something happens at the school and they say something like "you never told us that" you can look back and see if you did. For instance my son's school was told he is to NEVER have grapefruit or grapefruit juice as it causes his seizure med to absorb improperly and can quickly cause an overdose, one day I went to the school and found out a parent brought in some of those pouches of gummy snacks (which contained grapefruit juice), now at 6yrs old my son can't read the ingredients so it was up to his EA to either read them or not allow him to have any. Unfortunately his EA didn't read the ingredients and allowed him to have some, BIG NO-NO, when I fumed about this I was told they didn't know so I went back over the medical plan I did with the school at the beginning of the year and lo and behold it was there! After that I went in and reviewed his medical plan with them and we made a HUGE sign saying he can't have grapefruit and even had his doctor write a letter saying the consumption can lead to a drug overdose, coma, and death. They will never make that mistake again.
Resources and Funding: When you come across resources, whether you need them or not right now, add a reminder to your binder and include as much detail as possible about the program like what it's for, the criteria for it, and contact information. Keep receipts and letters you have received from programs you have used and keep track of what you received from them and when. Some programs are a one time thing and you may forget you've used them years down the road and this will help prevent you from going through the sometimes lengthy application processes when you wont qualify. Others have a time frame, one request per year, every other year, etc and this will allow you to look back and see when it was you last used them. This portion will also help you help other families, you won't be wracking you brain trying to think of a program's name and contact information that they may find useful that no one knows about...and believe me there are a lot of programs that seem to be hidden from us!
Finally, if you wish, use the front pocket or add a page protector to the very back of the binder so you can add stickers and other small things to keep you and your kids busy. Don't forget to store your pen, marker, and highlighter in one of the pockets as well. Not only will you need them later on but your kids can also use them to draw on the paper you put in the front of your binder! (you can also store a few crayons, pencil crayons, or colored markers in there too for them)
I hope you find this as helpful as we do, our binder goes EVERYWHERE, we take it to every appointment, ER visit, and hand it to the ambulance attendants when we have to call the ambulance, especially if for some reason we can't ride along.
***TIP: At the end of each clinic/appointment ask for a copy of the report for that day, most clinics will gladly send you a copy once the chart has been completed.
What can you do to make things easier for yourself and any doctors and specialists you deal with? You create your child's medical bible!
Things you will need:
1. A good binder, one with pockets on the inside and if you wish a clear pouch on the outside.
2. Dividers: how many depends on how many sections you feel you need. you can even make your own by getting a heavy stock paper and the stick on tabs.
3. A pen, Sharpie marker (or any fine tipped permanent marker), and at least one highlighter.
4, A package of the stickers that say "HELLO" or "ALERT" in red across the top and have writing space below. (red is the comment colour used to draw attention to something important so they must be red, if you can't find any get the white sticker and with a red marker make a BOLD outline around it)
5. A hole punch
6. A computer, printer, and some quiet time! =) if you can get it!
OPTIONAL:
6. Page protectors: though these seem great and I do use a few they do block the dividers!
7. Large envelope
8. Any medical records/information you currently have.
First off take those "hello" stickers, you want one for allergies and one for medications, write that on the top of each and highlight it. Now write what meds they are on, what the doses are, and when they get them, you can use as many as you need. On the second one write down their allergies and reactions. Now take them and stick them to the BOTTOM of the front cover of your binder.
Now that you have moved to the binder turn it and take your sharpie and write your child's full name on the spine and even their birthday if you wish. Do the same at the TOP of the front cover but not too large, now this next part you can either do on your computer, print it off, and stick it in that CLEAR front pocket or you can write it directly onto the cover (which is what I did). List ALL their diagnoses, one under each other, from most important to least. Yes I know they are all important but think of the ones that take priority over another or ones that tie into each other, put the one that may make things more complicated first. For instance my son has asthma but also has chronic inflammation of the lungs with chronic infiltrates and asthma-like symptoms (all this means is it can present like asthma attacks but treating with asthma meds will NOT work) I list his lung disease FIRST that way they need to read it before they move on to asthma. If asthma was listed first they may not read any further due to his presentation and automatically assume standard asthma treatments will do the trick.
Once you have finished that take your dividers and write on the edges the categories listed below, you do not have to use them all and can even add your own, do what fits your circumstances best! Once you are done add them to your binder and you are ready to begin adding things to it, if you chose to get an envelope glue it to the inside of the back cover or stick it in one of the pockets, be warned though that not gluing it means you are more likely to loose it (this will be used to store receipts, cards, or anything else you find important until you can put them away properly, which I advise you to do!)
-Personal Information
-Medical History and Alleries
-Childhood Illnesses and Immunizations
-Medical Team
-Equipment and Supplies
-Care Log (aka appointments & hospital stays)
-Bloodwork and Test Results
-Medications
-Assessment Reports
-Therapy/Schooling
-Resources/Funding
If your child is old enough have them decorate a few pages to put at the front of the binder (before any dividers) and add a few blank pages or coloring sheets for them to color on later (like while in hospital), glue family photos of good times to stock or construction paper and add them in too. Not only does this personalize the binder but it gives your child something to look at while away from family. It also allows anyone you are dealing with to see what your child and family is like when your child is not ill, they are no longer just a sick child, they are a child who loves the swings or has a blast with his family.
Now the headings are pretty straight forward but I will still go into more details on them.
Personal Information: Include your child's name, age, birthday, insurance numbers and anything else that is important. Also include who their siblings are and who you are, even include a picture beside each name so they can put a face to the name. Add in your contact information, their primary care teams information, emergency contacts and number of relative they may want to call while they are in hospital (put in a signed waiver saying it's ok for you child to call them). That way if you are not there and they want to talk to grandma they, or staff, can call them so they can talk. Also include their likes, dislikes, and a copy of their routine, for example is there a special way they take their medications? is there a blanket or toy they need to have when they fall asleep? is there a special song you sing to calm them down? if so include the lyrics and if possible name a common tune it's sung to.
Medical History and Allergies: Make sure the name of the allergy and type of reaction are in BOLD letters, you can even make them red to highlight them more. Include all their medical history here and if they have a rare or uncommon condition print off information about it but make the first page of it highlight the key aspects of it. For instance my son has a rare form of epilepsy with some unusual seizures so we highlight what seizures he has and in the information we provided we highlight (with the highlighter) the information we said was important so they know where to read if they only want a brief overview.
Childhood illnesses and Immunizations: Include a copy of your child's immunizations, if you don't immunize say so, and if there is a medical reason for it tell them what it is (eg allergy, bad reaction, etc). Also include a list of childhood illnesses they've had, and no I'm not talking every cold/flu, focus on the important ones. For instance my son has suffered from repeated iGAS infections and cellulitis, those need too be know. List things like chicken pox, whooping cough, NEC, RSV, and other illnesses you think are important to know about. Include the date, or approximate date if you can't remember, treatment received, if there was a hospital admission or ER visit etc.
Medical Team: Do a few pages, if needed, do one for doctors/specialists/clinics, nurses, therapists etc when you list each include all the contact information you have for them. You want phone numbers, pager numbers, addresses, which hospital(s) they work out of or program they are part of, and even e-mail addresses if you have them. You can even split it as specialists and community supports, do whatever you feel is best for you but try to include everyone and include clinic days (if they have set ones) and how often you see each of them, if your child has been discharged from their services indicate that but keep them in your file. This way if months or years down the road you need their services again you have the information needed to contact them or have new referrals sent to them.
Equipment and Supplies: Include the name of the equipment and/or supply, any identification number on it, where you got it from, their contact information, and what it is used for. If they are supplies that you order regularly add in how often you reorder or the date you usually do. If you have any warranty papers or manuals you can also add them to this section or a reminder of where you put them.
Care Log: This is where you list ALL your appointments, ER visits, hospital admission, surgeries, procedures etc. include date (and time if you wish), the reason for it, the outcome (meds etc), and when to expect a follow-up. Also include the doctor's name, hospital, and any contact information you may need. You can also take notes from these appointments and put them in as well, this way you can go back on them later and see if you have additional questions you may want to ask (and yes I suggest you take notes during appointments, especially if they are making changes to something or giving you new information or a new diagnosis!). Also keep any medical records you have here (or alternatively under Medical History), separate them by clinic and/or doctor. This is actually where I use the paper protectors in our binder, each page protector has the name of the clinic that the enclosed records are from and they are in alphabetical order, in front of them all is a print out with a table of contents so they know exactly what is in this section.
Bloodwork and Test Results: Include copies of any and all tests results you have, even if you have to pen them onto a piece of paper. Include labs, x-rays, ultrasounds, etc, even if you don't have the results keep a log as to what was done and when, it can come in very helpful.
Medications: Include two or more sections, one for prescription, over the counter meds, and other things they are given on a regular basis that may interfere with medications they may be prescribed (like vitamins, herbs, etc). With each you want to list what it is that was given, the dose, how often it's given, start and end dates, who prescribed it, and why it was prescribed.
Assessments and Reports: Have they had a feeding study? did the doctor do a developmental assessment? put the reports in here, put anything in here that doesn't all under the next category.
Therapy and Schooling: Keep records of everything, therapy reports, report cards, school/therapist assessments, their education plan (known as an IEP here) and a copy of anything you gave the school about their medical history and treatment protocols. This is an asset! This way if something happens at the school and they say something like "you never told us that" you can look back and see if you did. For instance my son's school was told he is to NEVER have grapefruit or grapefruit juice as it causes his seizure med to absorb improperly and can quickly cause an overdose, one day I went to the school and found out a parent brought in some of those pouches of gummy snacks (which contained grapefruit juice), now at 6yrs old my son can't read the ingredients so it was up to his EA to either read them or not allow him to have any. Unfortunately his EA didn't read the ingredients and allowed him to have some, BIG NO-NO, when I fumed about this I was told they didn't know so I went back over the medical plan I did with the school at the beginning of the year and lo and behold it was there! After that I went in and reviewed his medical plan with them and we made a HUGE sign saying he can't have grapefruit and even had his doctor write a letter saying the consumption can lead to a drug overdose, coma, and death. They will never make that mistake again.
Resources and Funding: When you come across resources, whether you need them or not right now, add a reminder to your binder and include as much detail as possible about the program like what it's for, the criteria for it, and contact information. Keep receipts and letters you have received from programs you have used and keep track of what you received from them and when. Some programs are a one time thing and you may forget you've used them years down the road and this will help prevent you from going through the sometimes lengthy application processes when you wont qualify. Others have a time frame, one request per year, every other year, etc and this will allow you to look back and see when it was you last used them. This portion will also help you help other families, you won't be wracking you brain trying to think of a program's name and contact information that they may find useful that no one knows about...and believe me there are a lot of programs that seem to be hidden from us!
Finally, if you wish, use the front pocket or add a page protector to the very back of the binder so you can add stickers and other small things to keep you and your kids busy. Don't forget to store your pen, marker, and highlighter in one of the pockets as well. Not only will you need them later on but your kids can also use them to draw on the paper you put in the front of your binder! (you can also store a few crayons, pencil crayons, or colored markers in there too for them)
I hope you find this as helpful as we do, our binder goes EVERYWHERE, we take it to every appointment, ER visit, and hand it to the ambulance attendants when we have to call the ambulance, especially if for some reason we can't ride along.
***TIP: At the end of each clinic/appointment ask for a copy of the report for that day, most clinics will gladly send you a copy once the chart has been completed.
Tuesday, January 8, 2013
Don't let your child's disability define them.
"Can't" is not in our dictionary, don't let it be in yours!
Don't fall into the trap, the one that tells you your child is defined by their disability, when medical professionals talk to you about their "prognosis" they are talking about the predicted outcome of an illness, disease, or disability. Take what they say with a gain of salt, they never know with complete certainty how something will and will not affect your child, each child's progression is unique, though you may be able to draw parallels between others with the same condition there are many things that effect the outcome which is why two people with the same disability may be at two different levels throughout their development.
My son for instance has severe PVL, caused my medical malpractice during his delivery, and developed Cerebral Palsy. The day we found out the extend of his brain damage I had a neurologist come into the room to explain what his level of damage meant. I was told "I have never seen PVL this bad in a child who has survived the NICU, you have to be prepared for what is going to come. I'm sorry but with this amount of damage the outlook isn't that great, severe quad spastic cerebral palsy is the most likely outcome. It is unlikely he will talk, crawl, walk, he has a high chance of being deaf and having vision problems, and less than 1% have normal intelligence. I'm sorry." He was VERY, VERY WRONG! By the time we found out how severe his damage was he was already doing the commando crawl, talking, pull himself to a stand, etc. the neurologist was shocked that he was talking about Nicky, he thought he was talking about his brother who was sleeping hidden in his stroller. He was so shocked in fact that he walked out of the room to verify he had the right child and report, he was not the child the scans implied he'd be. -Which is why we are thankful his damage was hidden from us for so long, if he would have had his level of damage and prognosis on file he would not have qualified for the INTENSE therapy he had gotten since shortly after his discharge. Sadly though even with his level of progress once it was on file, because with his level of damage his was "unlikely to progress", his level of support was being drastically cut which left us with only one option...to pay for it out of pocket!
Years later when he was diagnosed with epilepsy we were greeted by the same shock, they were expecting a severely disabled child, they expected him to be "infant like" heck even the guy who did his EEG expected the same. When his EEG was over and done with we were told he was having short seizures every few minutes, both awake and asleep, when they realized how well he has progressed the treatment plan went from simply trying to minimize them to trying to eliminate them. Once again he did not fit into the mold they had been taught he'd fit into, he was thriving, and even though he did have some issues that were caused by the seizures they were, for the most part, overcome shortly after he started treatment.
We don't know "can't", he does not live in this house, and is not welcome here. In fact "won't" isn't welcome either, you will never know what your child is capable of doing unless he is given every chance to try. Yes there may be things he can't do and won't do but the key is to open every door, work towards small goals, and give them a chance. If your child can't walk, start with the basics, just like every other child they need foundation skills and even though they'll come naturally to some children, other they won't. Some of these skills they will still do poorly at, rolling was not a strong skill Nicky had and sitting properly unsupported isn't either, but that doesn't mean they wont be able to progress to the next step and develop the harder skills. We've been told he may never walk independently but we never tell him that and he is determined to do it, even tonight he grabbed the bottom piece to a lego table and held onto it while he was hunched over and walked a good 3 feet with it. He's grabbed onto the rail going upstairs and hoisted himself up and used it to try to walk up the stairs, he made it up two by himself. He also loves gymnastics, he took it in school, now he's determined to do a headstand. He doesn't even come close to doing it properly and quite frankly it makes me cringe, his version of the tripod is to put the side of his face on the ground instead of his head, he then slowly moves one leg at a time until his knees rest on his elbows, then he ever so slowly tries to stick his legs in the air. He has done this almost daily and you can see the determination in his eyes, so far he's got his knees part way up his chest, that's a few inches further than what he was able to do over the summer. Slowly he's doing it, slowly he's progressing, and I know that one day he will succeed. All the skills you'd think he would need to be able to do this he either hasn't developed or does poorly with, but that doesn't stop him from trying, and I won't either.
Give them every opportunity to try new skills out, help them, encourage them, even if they don't do it right or it looks too hard let them have a go. Eventually they'll expand what they want to learn and will try other things, but if you let their diagnoses hold them down and allow it to tell you what they can and cannot do, you may never know what they are truly capable of doing. Don't let their disability prevent you from opening the door to the possibility that they can do it or they may never even try. When they get older encourage them to become more active, it doesn't matter what the activity is, just find something they like and give them the opportunity to learn. Even if they can't do it on their own doesn't mean they can't do it at all, you can get special bikes with seating systems attached to them so you can take them for bike rides. There is ski equipment that allows them to sit while you ski around with them, you can get a sledge with or without a handle bar so either they can skate on their own or you can skate around with them. Don't be afraid of them getting a bump or bruise, if your child wasn't disabled it'd be a normal part of childhood, allow them to try even if there is a risk. You wouldn't stop a "normal" child from learning to ride a bike or skating just because they may get hurt so don't prevent your child from having an opportunity to try new things either.
Nicky has taken up wheelchair basketball, he is the youngest person on the team here, he plays with teens and adults alike and they don't know the word can't either. They don't even allow him to get away with slacking off, he is part of the team and he's expected to give it his all just like everyone else. He races back and forth up and down the court on his own, he's passed the ball and passes it back, he is not left out and his disability is ignored. There is no "he can't do it", or "this is too hard for him", and definitely no "take it easy on him", he choose to play and begs to go back every week, he loves that they allow him to play without babying him or doing everything for him. Though there are times he gets lazy and wishes someone would push him and do some of the work for him, but he's 6 and I wouldn't expect any less, it's normal for people to give up or get lazy but he has a whole team cheering him on and reminding him he can do it and he will do it. Yes it puts me on edge and I'm scared he may get hurt someday but if he wasn't disabled there would still be risks, when he asks to try or do things I do weigh the risks but I also ask myself "If his brother asked to play, would I allow him to?". For this activity it's a yes, and in fact even his younger brother it was a yes, he may not have played because it was too risky for a 4yr old to be out playing with adults but he stayed on the sidelines and learned to pass the ball and get around in the wheelchair (which he's a pro at) and a few weeks later, after they were done playing, they brought all our boys out onto the court and played a child friendly game with them. By the way my boys' won =)
I'm not saying your child will overcome all their obstacles or that they will be able to do some of the things my son does. I am saying to make sure you give them every chance possible to expand their skills and learn new things. "Disabled" doesn't mean "unable" it just means they do things differently and some times need to find their own way to do things and just because they do something differently doesn't mean it wrong or they shouldn't do it, it means they have adapted and removed the road block that says "You can't do this".
My son for instance has severe PVL, caused my medical malpractice during his delivery, and developed Cerebral Palsy. The day we found out the extend of his brain damage I had a neurologist come into the room to explain what his level of damage meant. I was told "I have never seen PVL this bad in a child who has survived the NICU, you have to be prepared for what is going to come. I'm sorry but with this amount of damage the outlook isn't that great, severe quad spastic cerebral palsy is the most likely outcome. It is unlikely he will talk, crawl, walk, he has a high chance of being deaf and having vision problems, and less than 1% have normal intelligence. I'm sorry." He was VERY, VERY WRONG! By the time we found out how severe his damage was he was already doing the commando crawl, talking, pull himself to a stand, etc. the neurologist was shocked that he was talking about Nicky, he thought he was talking about his brother who was sleeping hidden in his stroller. He was so shocked in fact that he walked out of the room to verify he had the right child and report, he was not the child the scans implied he'd be. -Which is why we are thankful his damage was hidden from us for so long, if he would have had his level of damage and prognosis on file he would not have qualified for the INTENSE therapy he had gotten since shortly after his discharge. Sadly though even with his level of progress once it was on file, because with his level of damage his was "unlikely to progress", his level of support was being drastically cut which left us with only one option...to pay for it out of pocket!
Years later when he was diagnosed with epilepsy we were greeted by the same shock, they were expecting a severely disabled child, they expected him to be "infant like" heck even the guy who did his EEG expected the same. When his EEG was over and done with we were told he was having short seizures every few minutes, both awake and asleep, when they realized how well he has progressed the treatment plan went from simply trying to minimize them to trying to eliminate them. Once again he did not fit into the mold they had been taught he'd fit into, he was thriving, and even though he did have some issues that were caused by the seizures they were, for the most part, overcome shortly after he started treatment.
We don't know "can't", he does not live in this house, and is not welcome here. In fact "won't" isn't welcome either, you will never know what your child is capable of doing unless he is given every chance to try. Yes there may be things he can't do and won't do but the key is to open every door, work towards small goals, and give them a chance. If your child can't walk, start with the basics, just like every other child they need foundation skills and even though they'll come naturally to some children, other they won't. Some of these skills they will still do poorly at, rolling was not a strong skill Nicky had and sitting properly unsupported isn't either, but that doesn't mean they wont be able to progress to the next step and develop the harder skills. We've been told he may never walk independently but we never tell him that and he is determined to do it, even tonight he grabbed the bottom piece to a lego table and held onto it while he was hunched over and walked a good 3 feet with it. He's grabbed onto the rail going upstairs and hoisted himself up and used it to try to walk up the stairs, he made it up two by himself. He also loves gymnastics, he took it in school, now he's determined to do a headstand. He doesn't even come close to doing it properly and quite frankly it makes me cringe, his version of the tripod is to put the side of his face on the ground instead of his head, he then slowly moves one leg at a time until his knees rest on his elbows, then he ever so slowly tries to stick his legs in the air. He has done this almost daily and you can see the determination in his eyes, so far he's got his knees part way up his chest, that's a few inches further than what he was able to do over the summer. Slowly he's doing it, slowly he's progressing, and I know that one day he will succeed. All the skills you'd think he would need to be able to do this he either hasn't developed or does poorly with, but that doesn't stop him from trying, and I won't either.
Give them every opportunity to try new skills out, help them, encourage them, even if they don't do it right or it looks too hard let them have a go. Eventually they'll expand what they want to learn and will try other things, but if you let their diagnoses hold them down and allow it to tell you what they can and cannot do, you may never know what they are truly capable of doing. Don't let their disability prevent you from opening the door to the possibility that they can do it or they may never even try. When they get older encourage them to become more active, it doesn't matter what the activity is, just find something they like and give them the opportunity to learn. Even if they can't do it on their own doesn't mean they can't do it at all, you can get special bikes with seating systems attached to them so you can take them for bike rides. There is ski equipment that allows them to sit while you ski around with them, you can get a sledge with or without a handle bar so either they can skate on their own or you can skate around with them. Don't be afraid of them getting a bump or bruise, if your child wasn't disabled it'd be a normal part of childhood, allow them to try even if there is a risk. You wouldn't stop a "normal" child from learning to ride a bike or skating just because they may get hurt so don't prevent your child from having an opportunity to try new things either.
Nicky has taken up wheelchair basketball, he is the youngest person on the team here, he plays with teens and adults alike and they don't know the word can't either. They don't even allow him to get away with slacking off, he is part of the team and he's expected to give it his all just like everyone else. He races back and forth up and down the court on his own, he's passed the ball and passes it back, he is not left out and his disability is ignored. There is no "he can't do it", or "this is too hard for him", and definitely no "take it easy on him", he choose to play and begs to go back every week, he loves that they allow him to play without babying him or doing everything for him. Though there are times he gets lazy and wishes someone would push him and do some of the work for him, but he's 6 and I wouldn't expect any less, it's normal for people to give up or get lazy but he has a whole team cheering him on and reminding him he can do it and he will do it. Yes it puts me on edge and I'm scared he may get hurt someday but if he wasn't disabled there would still be risks, when he asks to try or do things I do weigh the risks but I also ask myself "If his brother asked to play, would I allow him to?". For this activity it's a yes, and in fact even his younger brother it was a yes, he may not have played because it was too risky for a 4yr old to be out playing with adults but he stayed on the sidelines and learned to pass the ball and get around in the wheelchair (which he's a pro at) and a few weeks later, after they were done playing, they brought all our boys out onto the court and played a child friendly game with them. By the way my boys' won =)
I'm not saying your child will overcome all their obstacles or that they will be able to do some of the things my son does. I am saying to make sure you give them every chance possible to expand their skills and learn new things. "Disabled" doesn't mean "unable" it just means they do things differently and some times need to find their own way to do things and just because they do something differently doesn't mean it wrong or they shouldn't do it, it means they have adapted and removed the road block that says "You can't do this".
Sunday, January 6, 2013
Understanding and support, it's a two way street.
Time and time again I hear my fellow parents of special needs and preemie children bellow out that they want parents of children born at term or without special needs to understand what they are going through and support them. You cannot however ask this of them without doing the same in return.
I have seen many parents of spec needs children and preemie vent their frustrations because a parent is complaining that their child has a cold, or the flu, or complains because their child is keeping them up all night. I have seen them say "I wish I could complain about that, they don't know how lucky they are that they got to bring their baby home and get those sleepless nights" or "Can you believe how much she is over reacting? MY CHILD has it much worse and I don't act like that." I even had the unpleasant experience of witnesses an act of cruelty, and yes that is what it was, in the OR waiting room and this is how it went;
Parent A walks into the OR waiting room in tears while her husband rubs her shoulders and tells her everything will be ok and escorts her to a couch to sit while he signs them in.
Parent B sitting across from her moves beside her and gives her a hug and says "Everything will be ok, you just wait and see."
Parent A "Thank you, it's just so hard to say goodbye to them and hand them over to a stranger"
Parent B "What is your child in for, if you don't mind me asking"
Parent A "He's having his tonsils taken out"
Parent B with a look f disgust "You're crying over tonsils? You know there are kids in here undergoing much worse, there are kids having tumors removed, kids up on the 8th floor fighting cancer, and kids undergoing open heart surgery and you're crying over tonsils? You should be ashamed of yourself and be thankful it's not something much worse, something that could kill your child!"
Parent C (my friend) and Parent D (myself) overhear this and rush over to reassure parent A that what she is feeling is perfectly normal and to cry all she wants because no matter the procedure it's a big deal.
Parent B proceeds to ask me why my child is in, he was undergoing a urethral dilation which is a simple procedure and I too am scoffed at. My friend pipes up her son was undergoing another open heart surgery, his 4th in three years, one that will hopefully buy him some time while he waits for a new heart. Her son had been waiting for 8 months already, he was in what they called the "weight trap" which meant not many hearts became available that would be suitable for him. Their only hope was to cross their fingers and wait for a heart, wait for another child to die, a family in their time of grief to give the gift of life. She told this lady how every parent has the right to cry for their child, even if it's over a hangnail, because she envies them, she wishes that was her that she could say she was crying over a simply procedure and that when it was over and her son had recovered she could bring him home.
You can not expect others to understand what you are going through or support you if you are putting them down because their child is not as sick or as premature as yours. If you expect understanding and support you have got to be willing to set aside your feelings and provide understand and support to those who have it "better".
Yes little Jimmy's sniffles and sleepless nights might have you envying his parents because when your child is ill it's hospital stays and praying that they make it through the night, but sniffles and sleepless nights is all they know, they do not know the horrors of the ICU or watching a child struggle for every breath. For them that illness is as huge as what your child's illness are to you, thought their circumstances may not be as bad as yours it doesn't mean they don't need to vent, or need a shoulder to cry on. Let them, give the the strength you have, give them the reassurance, support, and understanding you want when your child is struggling because once you've torn down that wall that divides you they are more likely to give you the support and understanding you need when you need it most.
If you find they are comparing their "health" child to your premature or special needs child and you think they shouldn't, remember they don't know any better, they know exactly what you knew before you entered this chapter of your life, NOTHING. Educate them, remind them how your child is different, and forgive them when they forget and do it all over again. You have the constant reminder day in and day out what it's like to have a preemie or spec needs child, they do not, they still live in their little bubble and don't pop it for them. Remember there is always someone out there who has it worse than you, you would not like it if someone threw it in your face constantly because you shouldn't complain, no matter how sick your child is, because someone else has it worse.
At least you have therapy, there are parents in other countries that have no access to this.
At least you have a surgeon who can try to fix your child, some aren't as luck.
At least your child made it, because some parents are burying their child today.
Don't feel guilty because you have it better than another, but do not shame and berate parents who have it better than you. Break down the wall that divides us, let us all get a better understand of what others are going through, and let's give them the love and support they need in their time of need even if they do not show us the same in return. They are virgins, we are not, let's teach them and let them teach us, let us both get a better understanding of the worlds we live in and maybe some day we wont have to cry out in frustration that we need understanding and support in our world because they will become one and we will all be able to lean on each other in any situation.
I have seen many parents of spec needs children and preemie vent their frustrations because a parent is complaining that their child has a cold, or the flu, or complains because their child is keeping them up all night. I have seen them say "I wish I could complain about that, they don't know how lucky they are that they got to bring their baby home and get those sleepless nights" or "Can you believe how much she is over reacting? MY CHILD has it much worse and I don't act like that." I even had the unpleasant experience of witnesses an act of cruelty, and yes that is what it was, in the OR waiting room and this is how it went;
Parent A walks into the OR waiting room in tears while her husband rubs her shoulders and tells her everything will be ok and escorts her to a couch to sit while he signs them in.
Parent B sitting across from her moves beside her and gives her a hug and says "Everything will be ok, you just wait and see."
Parent A "Thank you, it's just so hard to say goodbye to them and hand them over to a stranger"
Parent B "What is your child in for, if you don't mind me asking"
Parent A "He's having his tonsils taken out"
Parent B with a look f disgust "You're crying over tonsils? You know there are kids in here undergoing much worse, there are kids having tumors removed, kids up on the 8th floor fighting cancer, and kids undergoing open heart surgery and you're crying over tonsils? You should be ashamed of yourself and be thankful it's not something much worse, something that could kill your child!"
Parent C (my friend) and Parent D (myself) overhear this and rush over to reassure parent A that what she is feeling is perfectly normal and to cry all she wants because no matter the procedure it's a big deal.
Parent B proceeds to ask me why my child is in, he was undergoing a urethral dilation which is a simple procedure and I too am scoffed at. My friend pipes up her son was undergoing another open heart surgery, his 4th in three years, one that will hopefully buy him some time while he waits for a new heart. Her son had been waiting for 8 months already, he was in what they called the "weight trap" which meant not many hearts became available that would be suitable for him. Their only hope was to cross their fingers and wait for a heart, wait for another child to die, a family in their time of grief to give the gift of life. She told this lady how every parent has the right to cry for their child, even if it's over a hangnail, because she envies them, she wishes that was her that she could say she was crying over a simply procedure and that when it was over and her son had recovered she could bring him home.
You can not expect others to understand what you are going through or support you if you are putting them down because their child is not as sick or as premature as yours. If you expect understanding and support you have got to be willing to set aside your feelings and provide understand and support to those who have it "better".
Yes little Jimmy's sniffles and sleepless nights might have you envying his parents because when your child is ill it's hospital stays and praying that they make it through the night, but sniffles and sleepless nights is all they know, they do not know the horrors of the ICU or watching a child struggle for every breath. For them that illness is as huge as what your child's illness are to you, thought their circumstances may not be as bad as yours it doesn't mean they don't need to vent, or need a shoulder to cry on. Let them, give the the strength you have, give them the reassurance, support, and understanding you want when your child is struggling because once you've torn down that wall that divides you they are more likely to give you the support and understanding you need when you need it most.
If you find they are comparing their "health" child to your premature or special needs child and you think they shouldn't, remember they don't know any better, they know exactly what you knew before you entered this chapter of your life, NOTHING. Educate them, remind them how your child is different, and forgive them when they forget and do it all over again. You have the constant reminder day in and day out what it's like to have a preemie or spec needs child, they do not, they still live in their little bubble and don't pop it for them. Remember there is always someone out there who has it worse than you, you would not like it if someone threw it in your face constantly because you shouldn't complain, no matter how sick your child is, because someone else has it worse.
At least you have therapy, there are parents in other countries that have no access to this.
At least you have a surgeon who can try to fix your child, some aren't as luck.
At least your child made it, because some parents are burying their child today.
Don't feel guilty because you have it better than another, but do not shame and berate parents who have it better than you. Break down the wall that divides us, let us all get a better understand of what others are going through, and let's give them the love and support they need in their time of need even if they do not show us the same in return. They are virgins, we are not, let's teach them and let them teach us, let us both get a better understanding of the worlds we live in and maybe some day we wont have to cry out in frustration that we need understanding and support in our world because they will become one and we will all be able to lean on each other in any situation.
Saturday, January 5, 2013
Think before you post!
Humiliation, shame, and embarrassment are feelings that some parents with special needs children lose their fear of very fast. We eventually discover that as long as what we are doing is in the best interest of our children, and family, we don't have to feel ashamed and beat ourselves up over things like we used to before. For example we learn to ask for help when we need it and even though it's still hard to admit we need help, and it is still embarrassing to put yourself out there and admit we can't do what parents are supposed to be able to do, we do it and the shame quickly fades because we know our children come first and that is where we put them. We put our pride in our pockets, moved ourselves out of our comfort zone, and did what our children needed us to do.
The last thing we need is someone else with a special child coming along and bragging how they don't need help, don't ask for help, and therefor others shouldn't either and they feel bad for the children of those parents because they are "using them". Even worse is when they continuously make these comments and when called out backpedal claiming that is not what they said, not what they meant, and change their position and story. Why? Because no one bothers reading their backpedaling or their apologies and even if they do the damage is already done. Think about your own behaviors when you read blogs or facebook posts, unless it's someone you know, or something that really peaks your interest the likelihood of going back to that post and reading others comments are slim, especially if you didn't comment on it yourself. Even if you happen to go back to it and read the backpedaling, even if you come to the conclusion that that person is a fraud or unjustly targeting people that initial post left a mark in your mind that wont soon be forgotten. Not when the person compares parents of sick children to scammers and puts them on the same level with them if they ask for help.
Think back to high school, or work, or the last time you were told something about a new person, stranger, or even a friend even if it's later proved to be false their name will still be associated with it. I can still remember my best friend in grade school being called a thief and the stories told behind her back, even though I knew they were not true (they were even proven to be false) I still thought about her if something of mine went missing. Even fifteen years later when a ring disappeared from our house after she visited my thoughts went to her even though she was not the only person in our house. Why? Because her name was associated theft, whether she was guilty or not, and that caused flags to shoot up as soon as I noticed the ring was missing. She was not guilty, the ring had been knocked onto the floor, the area rug it was on was picked up and taken outside to be shaken off, thankfully it fell on our porch and was found months later when we went to move hidden behind a flower pot.
The words spoken years earlier did their damage and ruined the reputation of someone who was guilty of nothing, the same thing can and will happen over posts like this. People will associate scammers and parents of special children who ask for help with eachother, people wont be as open to the idea of helping and even if they do help the level of support they would have provided wont nearly be as high.
Speaking of the level of support, I would like to remind people that actions speak louder than words, even louder than prayers. I will not stop you or ask you to stop praying for someone or something but lets be realistic about it, praying for a starving child does not give them the food they need, praying for a family whose house burnt to the gound doesn't replace their belongings, praying for more blood during a blood shortage does not make more blood. Donate to a food bank, volunteer or donate to a shelter or hospital, roll up your sleeve and actually donate blood and if you can't provide information to people who can, especially ones who don't already, and help increase the supply. I may not be completely certain about this but I highly doubt your God said "Do nothing for others, do not lend a hand, do not provide support, do not lift a finger at all. Only pray to me and ask me to do everything for you and them." I'm betting he'd be happy to see people actually do things for each other instead of always asking and expect him to do it instead.
Remember everyone.
1. Think before you speak.
2. Do not bash family who have built up the strength and courage to ask for help just because you don't need it. If you do don't be surprised if you get the same response from others when you need help.
3. Get off your butt and do something for yourself and others, don't expect someone else (eg. God) to do everything for you.
4. Do not ask parents why prayers aren't enough. For one not everyone is religious and two if someone has a dilemma that needs to be dealt with ASAP it is likely that they require someone to act to help them not just prayers. For instance a person's child is airlifted a few hundred miles away and they don't have any gas in their car to get there, they don't need just a prayer they actually need gas, they need someone kind enough who can provide it for them. If you can not be the person to help do not be the person who hinders by berating the parents and scaring off people who were willing to help them.
5. If you can't say something nice, say nothing at all!
6. If you can't say something nice, say nothing at all!
7. If you can't say something nice, say nothing at all! Hopefully by saying it three times some people will get the point. Just because you can hide behind a computer and say anything you want doesn't mean you should. Don't be an ass.
The last thing we need is someone else with a special child coming along and bragging how they don't need help, don't ask for help, and therefor others shouldn't either and they feel bad for the children of those parents because they are "using them". Even worse is when they continuously make these comments and when called out backpedal claiming that is not what they said, not what they meant, and change their position and story. Why? Because no one bothers reading their backpedaling or their apologies and even if they do the damage is already done. Think about your own behaviors when you read blogs or facebook posts, unless it's someone you know, or something that really peaks your interest the likelihood of going back to that post and reading others comments are slim, especially if you didn't comment on it yourself. Even if you happen to go back to it and read the backpedaling, even if you come to the conclusion that that person is a fraud or unjustly targeting people that initial post left a mark in your mind that wont soon be forgotten. Not when the person compares parents of sick children to scammers and puts them on the same level with them if they ask for help.
Think back to high school, or work, or the last time you were told something about a new person, stranger, or even a friend even if it's later proved to be false their name will still be associated with it. I can still remember my best friend in grade school being called a thief and the stories told behind her back, even though I knew they were not true (they were even proven to be false) I still thought about her if something of mine went missing. Even fifteen years later when a ring disappeared from our house after she visited my thoughts went to her even though she was not the only person in our house. Why? Because her name was associated theft, whether she was guilty or not, and that caused flags to shoot up as soon as I noticed the ring was missing. She was not guilty, the ring had been knocked onto the floor, the area rug it was on was picked up and taken outside to be shaken off, thankfully it fell on our porch and was found months later when we went to move hidden behind a flower pot.
The words spoken years earlier did their damage and ruined the reputation of someone who was guilty of nothing, the same thing can and will happen over posts like this. People will associate scammers and parents of special children who ask for help with eachother, people wont be as open to the idea of helping and even if they do help the level of support they would have provided wont nearly be as high.
Speaking of the level of support, I would like to remind people that actions speak louder than words, even louder than prayers. I will not stop you or ask you to stop praying for someone or something but lets be realistic about it, praying for a starving child does not give them the food they need, praying for a family whose house burnt to the gound doesn't replace their belongings, praying for more blood during a blood shortage does not make more blood. Donate to a food bank, volunteer or donate to a shelter or hospital, roll up your sleeve and actually donate blood and if you can't provide information to people who can, especially ones who don't already, and help increase the supply. I may not be completely certain about this but I highly doubt your God said "Do nothing for others, do not lend a hand, do not provide support, do not lift a finger at all. Only pray to me and ask me to do everything for you and them." I'm betting he'd be happy to see people actually do things for each other instead of always asking and expect him to do it instead.
Remember everyone.
1. Think before you speak.
2. Do not bash family who have built up the strength and courage to ask for help just because you don't need it. If you do don't be surprised if you get the same response from others when you need help.
3. Get off your butt and do something for yourself and others, don't expect someone else (eg. God) to do everything for you.
4. Do not ask parents why prayers aren't enough. For one not everyone is religious and two if someone has a dilemma that needs to be dealt with ASAP it is likely that they require someone to act to help them not just prayers. For instance a person's child is airlifted a few hundred miles away and they don't have any gas in their car to get there, they don't need just a prayer they actually need gas, they need someone kind enough who can provide it for them. If you can not be the person to help do not be the person who hinders by berating the parents and scaring off people who were willing to help them.
5. If you can't say something nice, say nothing at all!
6. If you can't say something nice, say nothing at all!
7. If you can't say something nice, say nothing at all! Hopefully by saying it three times some people will get the point. Just because you can hide behind a computer and say anything you want doesn't mean you should. Don't be an ass.
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