The Sounds of Parenthood

 There are many sounds that come with parenthood. Some are wonderful. Some make us angry or scared. Some make us laugh. There are a few that make us cry, and a few make us feel as if our world is being torn in two.

I may write something on this topic under the Special Manners at some point because it is something that a lot of folks just don't get, but for now I just want to share with you one of those moments in my life that is raw for me. Hope you don't mind too much....

Often I see moments of my life in my mind tied to a smell, a touch, a person or a sound. The memory of the rough touch of an attacker is triggered by a touch on my hip even done with love or support. There is a teddy bear that I keep to remind me to be grateful of what I have, because I have gone without. A song can take me miles back into the past to sitting on the beach in California watching the sun sink into the ocean. Do you know how that is, to have a thought or feeling triggered by something?

As a parent, I have heard many noises. The first memorable noise is that soft mew of a content newborn son over 19 years back. I still smile when I hear it from other babies. It's a warm and fuzzy feeling. There are so many good sounds connected with being a parent. There is the sound of the first word and the "I Love You" that I waited over 4 years to hear. 

There are the sounds that makes a parent laugh out loud... for years to follow. The lines from a school play slightly messed up so the president comes out to be telling a lie still makes for a good story. Stories told by a six year old replay in a mother's head in every cute detail. An over heard battle between Barbie and Ken can come to mind as Dad watches his teenager argue with her newest crush.

Some sounds just make us mad. The key in the lock three hours past curfew, the tip toes on the stairs of a child told to go to bed, and the whine of a kid telling lies. There are sounds we pray we never hear. The knock on the door from a man in uniform coming to tell us how a roadside bomb took our child's life tops that list. Right behind that is the ringing of the phone with a police officer on the other end.

There are some sounds that bring us to our knees, tears to our eyes, and strength to our spines. I'm going to tell you about one of them. It is a sound I hear too often. It averages about every three months or so. 

The worst sound I have ever heard is the noise my son makes before he has a grand-mal seizure. I terrifies me, it breaks my heart, and it is one of the few things I can't fix. 

It's like a loud intake of air when you really can't take in air. It's so loud you can hear it rooms away. The first time you hear it, you don't know what it means and then you spend the next moments losing your mind as your child spasms, coughs, and fights their way through it. And the second time isn't any better. The only thing to be said for it is that you know what's coming.

That noise means hours for my son to know weakness, pain, confusion. It means his mother will need to be strong for him though inside she has tears streaming down her cheeks. She will happily smack the next fool who tells her she shouldn't be carrying that little boy through the store. 

I have many sounds that bring many feelings and memories to the surface. I love the sound of his laughter, the way he says some of the few words he has, and I treasure the soft sounds of his breathing in the night. Don't get me wrong. The bad never completely over shadows the good, but to be honest that sound is one that echos long after it fades. It never gets easier to hear. 

Some Links:

The Epilepsy Foundation 

Web MD

Angels 4 Epilepsy

Special Manners 101 - Free Medical Advice and A Meet and Greet

This entry is going to serve two purposes. The first is to cover yet another misstep by well meaning folks or the just plain interfering know it alls. The second is to introduce you to a few important folks who have helped me in several different ways. I hope to send you to a few great articles or blog entries that you may get something from. Work first though so on to the manner of the day......

Special  Manners # 105: Free Medical Advice!!!! is highly over rated.

I know your mother taught you how to cure a bee sting with butter, that you raised 12.5 kids, and that you never swim until at least 35 minutes after you eat. I know you are smarter then me, got a medical license from the Cracker Jack box 4 times in a row, and watch Dr. House every time it's on even if you have seen that one before. I get it. I think there is something you don't get, I don't need you to tell me how to treat my son's medical condition, what foods I can feed my husband, or if I hurt bad enough or am just lazy. I deal everyday so I am very practiced at it.

THE RULE:

I know I have covered this in a way before but I really want to cover the medical part of this. Each person who has something to deal with, deals with it in their own way. The title of the illness may be the same, the symptoms may run basically a similar line, but it may affect each person differently. And if you have no idea about a person's condition, or only base your words on what you think you know about something.... Keep it to yourself. Very Simple.

The Exceptions:
 
- Parents and other caregivers that gather in the waiting room of hospitals, doctors and therapists share information because we know that it comes from someone who understands the rules, who may have been at least close to our shoes. We share many of the ups and downs and understand the medical stuff that we may have in common. We want to know how they got their child to eat more than one food, we understand why their 5 year old still wears diapers, and we can all laugh at the water gun fight used as therapy. (Check that out here)

-  We listen to but don't always follow what teachers, doctors, nurses, and therapists tell us. Now before you judge that statement the wrong way, listen a minute. We listen. We take what we know of our child and apply the information to it but not before we look into this, research that, reason it all into a plan of action. We know and understand that they know the books, took the classes and put in the time but we also know we spend 24 hours a day knowing our "patient" and all the individual quirks they carry with them. We know our child.

- If we ask for your thoughts then we seriously want and welcome them. We trust you and trust that you understand that, like everyone else who has thoughts on the question, we will take what we can use and leave the rest. It isn't because we don't love you or want to cut you out. It is because we know our child, what we have been through, what the needs of our family amount to. 

The Manner: If you offer your opinion be prepared for the parent or the sufferer of what ever aliment you are trying to voice about, to do one of a few things: They may just nod then at the first opportunity change the subject. They may roll their eyes. There might be a straightening of their spine and their shoulders will go back. Then they will take a deep breath before educating you on why you are wrong, how many times they tried that, and how they know their kid or own conditions better then you ever could. Or they will simply tell you how you should keep your opinions to yourself or take care of your own family and not worry about theirs.

Final Point: Listen to the person who is there dealing on a daily bases. If they get angry or hurt by your interference, don't let it ruin the relationship. They deal with well meaning or just plain rude people very often. It wears you down so try to understand not judge. Too many folks judge and have no clue what a day in their life looks like. Learn from it and let it go and they are likely to do the same. Try really hard to not do it again.

Time to meet some good folks.
I am a middle of the road depending on the topic kind of gal. I have friends of every type - gay, straight, Christian, Pagan, Jewish, from several countries, special needs, typical and from all sides of the political table. I take what I can use and leave the rest. That said take what you can use from the people, companies and stories I share in the blog.

Mama Be Good is an awesome mom who is honest and open about the hardships and joys of raising a special and unique child. The reason I really like her writing is that honesty but also the smile I often leave after reading her entry and the sense that I'm not alone in the daily battles to find balance.

I have a really good friend that I really don't talk politics with. Zilla of the Resistance has her cause much as I have mine but hers is a lot more political then mine. *grin* It's a good thing we are friends. She is a great resource for finding information about Islam, a view from the right, and some heart touching stories from the not rich side of the screen.
 
And please feel free to drop a coin in the tip jars of the folks who's writing you think touches the lives of others.... like mine up there at the top of the page.

That brings me to another blogger that I think is awesome but will most likely avoid talking politics with. Now this blogger is great because of the great tips and thoughts for and about anyone trying to squeeze a few pennies out of the blogging rock. The Other McCain gives a real world look at things that is also fun to read. His new blog is here.

OK, that should get you started. I'll post a full body meet and greet in the near future because I think it will be fun. I'm just out of time for today! Thank you for the love and support from all of my followers and readers. 

Be Well!

Special Manners 101 - The Authorities Need To Learn How To Deal With Differences

Special Manner #104: You can NOT deal with Special Needs people the same way you deal with the hood from the wrong side of the tracks or the mother who drowns her baby because she wants to party.


There are people trying to look out for special needs children that don't understand how they function. There are law enforcement people trying to deal with people they see as defiant adults when it is just a scared person who is unable to function as directed.


I'm going to often use Autism in articles because it's what I know, what I see a rise in, and the simple fact that typically function people are going to have to learn to deal with the growing number of non-typical people.


Children's Services has a job to do. They are supposed to protect children from abuse, neglect, and help parents deal with being parents. that's their job. You would think that they would be aware of the way children of all kinds work. You would hope that they would be able to take each case as individual as the people they are dealing with. Sadly, sometimes good families are torn apart and bad ones are left intact.  


An upper middle class Michigan family is destroyed when a school aid took a severely Autistic 14 year old's communication device words as a sexual abuse allegation. She should have known better. She gave words where there were none and called CPS. They should have known better but instead they split this family up, called the cops, and pressed charges. The cops locked Dad up for 80 days, Mom for 5, and their two Autistic children were sent to separate youth homes away from family for 106 days. The doctors knew there was nothing to it. The prosecutors came around after a while.  Still this family struggles to get back into the family life they had before. There is one simple fact about this child that if people had listened and paid attention, then all of this could have been kept simple and resolved easily. ~ She CAN NOT use the complex speech that the aid credited her with ~

In Canada a father is fighting for his 9 year old daughter. Autistic kids are wanderers, escape artists, and afraid of little when it comes to dangers. He lost sight of his child in the fenced in backyard. He ran up and down the block and then called for help from the police. He LOOKED, not partied, for ten minutes and then called for help. He did everything one of us would do. She was found safe in a neighbors pool.

He is a good single father doing his best by his kids. He learned about the medications, the therapies, all the things that she needed. One quick minute he looked away and she was gone. It could happen to any of us. The authorities took her away, put her into a mental ward, gave her medications that have horrible side effects and told this loving father that it may take up to a year or more before she can come home... if at all. 


If the authorities knew autism and it's traits they would have looked beyond that moment and at the whole picture. They would have offered help instead of an institution. These kids do better in the known then then when someone comes in and messes up the works. Parents need help, not ridicule from folks who really have no clue.


More and more the police are coming face to face with people who either don't understand the rules or don't get how to play the "games" other folks do. Most don't belong stuck in a solitary cell to go crazy or in general population to be taken advantage of. most of the situations that having them cross paths with law enforcement could be handled in a much different way then they are.


Neli wanted to go to the library but it was closed. He was sitting quietly on the grass waiting until it opened, but boredom and a crossing guard got him up and moving. The guard called about a suspicious black man with a gun so an officer stopped Neli. He searched Neli and found nothing. The teenager then started to walk away which caused the cop to start a scuffle that caused injuries to both of them. 

They then locked him up. He is still in jail even after many folks stepped up to explain to the judge and jury that his disability and uninformed police training made the situation far worse then it needed to be. He is losing the battle to stay part of our world. He is withdrawing and is less vocal. His lawyers offered the court a plan that was fully funded and that involved him being treated and helped. The court said no and extended his time in jail.


An 18 year old boy that was all of 118 pounds was shot and killed because his mother asked for help. She called the police because her son had gotten depressed, into drugs, and they were arguing about his desire to go back to the home he had known before. The cops came in and instead of talking to the boy or letting his mother, they shot him because he was holding a small pocket knife.


An 11 year old boy ran away from school. I'm not going to go into what I think of that (ok, so I might) but the staff there called police to help them catch this autistic boy. They tackled him, handcuffed him, and when he banged his head in the car, they used a seat belt to restrain him. They kept him there screaming for 50 minutes. I am not so much against the police on this one other then to point out that they just didn't understand that the handcuffs and seat belt made it worse. I do feel that the school should have known how to handle him, they should have had some system in line, and he never should have gotten off school grounds. Nor should he have been so sent over the edge that he felt the need to run away. School should be a "safe" place for these kids.


The Manner: Educate everyone who may be a caregiver to your child. Educate everyone who feels the need to knock on your door about your child. Educate the local fire and police about kids like yours. People think they know a lot more then they really do. And as your child becomes an adult child, it will get scarier. You will have to prepare your child as best as you can about what to do if they should cross the path of officials.


Here are a few places to help:
~There are products sold on the Buttons and More that speak when your child can't, that can educate people about autism, and even a button or two that will make you smile.


~A lot of our low verbal kids are being taught different ways to communicate including sign. This site offers a great bunch of products as well as training opportunities. I suggest giving the information (if not the products) to your local emergency responders. I even gave one of the cards to the doctor that treated my son in the ER. Signing Families even offers opportunities for other industries that may cross paths with those who communicate with sign and also for groups like the scouts. So there is something for everyone here.


~Here are a couple of sites offering free training for emergency responders, though anyone who may work with the special needs folks may want to take a look.
      Safe Response (through MSU)
      POAC (Has several pots on the stove)
      Indiana's Course


If you know of others PLEASE share them in the comments so we can all help each other!

 

PSA #102 Parenthood Is A Choice, Childhood Is Not

Honestly, I have no idea where this is going so the title may have little to do with the direction this may end up going. I am feeling a little blue and a bit mad so buckle up and hang on tight.....

I am a mom that tries to always put the kids first. They get new shoes and I wear sandals when the snow is three inches deep. Doesn't bother me a bit. I can be beat down, bone tired but I am a wake at the sound of that boy's cries. When the sun rises again I start all over and try my darnedest to not let them see me cry. If food is tight, they eat first. Period. So what single mom, who weighs in at 700 pounds, tries to eat enough to gain another 300 pounds?

Donna Simpson has a FOUR year old daughter who helps her shop, cook, and generally all the things we mom's should be doing for our kids. Are people outraged by this? No, she has enough "fans" to earn $100,000 a year. Her career is eating, blogging about eating, taking pictures of her fat and her eating. Really? She is hoping to find a new man that is ten years younger to help lift some of the responsibilities from the shoulders of her young daughter. Are you kidding me? Her daughter should be playing, eating health food, and learning about the food pyramid, not worrying about what her mother is having for dinner. She should be having a childhood.... and her mother should be being a parent.

Two fathers in Michigan have made their children disappear. They claim they are safe. Safe? Three boys have been missing since Thanksgiving 2010. They are not with family, friends, or their parents. No one has seen them but they are safe.  A man that was due to go fight for our country in the fall is now sitting in jail. June 29th he took his 4 1/2 month old daughter and no one has seen her since. They found her clothes somewhere along the way. He told the mother of the little girl and his three year old daughter, that the baby is safe. No one has seen her. She is not with family, friends, or her parents but she is safe. Right. And a senator never lies. These children should have been outside playing, riding bikes, learning to crawl and being children. These men should have been parents.

We all know about Caylee Anthony's childhood. It was cut short. She died and then was thrown into the woods like garbage. Her mother was tried and acquitted of most of the charges. Little Caylee was dead while her mother partied for 31 days. Her grandmother reported her missing. Her grandfather tried to find her. No one is to blame or everyone is. There was full coverage of the trial on WFTV. Judge for yourself. Casey wanted to party and be young. Caylee needed a parent so she could be a child. Some one failed to see the gift in those big brown eyes.

Here's my point.... 

Parenthood is a choice. You don't have to be a parent in today's world. You can prevent it. You don't have to become a father. You don't have to become a mother. If you mess up and a baby is created and brought into the world, you still have options. 

Stand up and see that child into adulthood. Do the best you can to make sure that baby knows right from wrong, knows how to work and how to play. Put that child first. See that hunger and pain aren't an everyday part of their world but smiles and love are. Do the right thing.

OR

Give that baby up to someone with enough love in their hearts to do what you, for what ever reason, can't. You will be a better person for at least trying to give that baby a better life. There are no guarantees but at least you tried. And that makes you a good parent. 

Childhood is not something a child can choose. A couple of people who think they are grown enough to take responsibility for any out come of having sex get together to CHOOSE to bring that child here. That child then lives under what ever choices those adults make. Good, bad, pleasant, and painful are at the hands of the people the child counts on most.

Casey was called a good mom because her two year old daughter loved her. Um.... I would hope that a child loves their mother, it is a natural inborn thing. BUT it is much harder for a parent to love a child all the time. It isn't enough to love when the child is happy and being cute. You have to love them when they stink, are throwing up, being annoying, or when you can't find a sitter. You wanted to keep that baby so you are now a parent. The child did not have any choice.

I get tired and upset and crave just a few minutes of quiet. I get frustrated and wish I could just go out to eat and finish my food before the children start to throw french fries down the shirt of the people sitting behind us. I do not hit my children for wetting the bed. I don't get back at their dad by punishing them. I sure and heck don't ruin their lives with beatings, starvings, or other such stupid self centered crap.

Love your kids... you picked the path your life is on... you invited the kids to go with you... enjoy their company before it's too late.