Friday, December 16, 2011

Flu Shot or Not

Hi everyone!! It's so good to be back. It’s been a long 2 weeks. We're not 100 percent yet, but well on the way. The only thing left is getting rid of this pesky cough. I guess time and tea will take care of that.

I've been it really necessary to continue getting yearly flu shots? I could see them being necessary for a baby born early or perhaps other challenges that may make a child medically fragile, but once the child is stronger, I'm not so sure. My son had his flu shot a couple weeks ago. He’s never had a negative reaction until now. Within 48 hours after getting the flu vaccine, my son had a nose bleed and cold symptoms began. Symptoms were mild at first but quickly escalated into early stages of pneumonia. No matter what I did the fever would not break and everything took a downward spiral. We had to go back to the doctor to get an antibiotic and steroid. Of course, when I questioned the doctor about a possible bad reaction to the vaccine, I was given a generic explanation as to why the flu vaccine could not possibly cause such a reaction. Okay, I’m not ruling out the possibility of my son having an undetected bug, but it seems awfully strange that a healthy child showing no symptoms would get so sick, so fast, hmmmm. As I recall, a couple years ago my son had a slight cough and minor congestion when he received a flu shot during his annual well check. Nothing happened, he was perfectly fine. So what happened this time?

I'm no expert on the subject, but parents having premature babies or medically fragile babies tend to be more aggressive when treating colds and flu. We also tend to be particular about germs and even aware of the time of year our children are most susceptible. I pulled out all the stops. Got rid of all nasal congestion and prevented an ear infection, but could not break the fever. This is not typical for my son. His fevers usually break in two days. Whatever the case, I just don't know if it's worth getting the shot anymore.

Have any of you experienced problems taking flu or pneumonia vaccines? If so, I would love to hear from you and would like to post your stories. This is very serious. How safe are these vaccines? I’ve heard many others speak of having similar reactions, but never took it seriously because it was not an issue for my son, at least not at that time. I’m not sure what to think about these vaccines now.

If you would like to share your experience with flu/pneumonia vaccines, please email me, You may wish to add a comment to this post instead. Please be advised, Google Blogger is having some technical difficulties with posting comments and I’m not sure when it will resolved. It may take several tries before the post takes.

Thank you for reading my blog and sharingJ

Thursday, December 8, 2011

When My Child is Sick

I've spent the last 3 days nursing my son's cold and trying to think off some whitty way to share the experience with you. Truth is, I don't feel so fun or whitty right now. I just want to curl up in a dark place and cry. It greives me in my heart to see my son suffer. I'm greatful that he only gets colds once or twice a year, but when he gets sick it really takes a tole on him. Sometimes I get very angry because he's been through so much, but on other hand he could have been through so much more.

So I sit here watching my son breath. Every breath he takes while sick feels like a stab in my gut. If only I had a magic wond to take away all the discomfort. I know in calendar days this cold won't last long, but when I look into his eyes it feels like an eternity. I just want him to get better. The house is so quiet when he's sleeping. I miss the jumping, running, tossing and rewinding that he does everyday. I miss the giggles, laughs and babblings of his favorite movies. I miss the quiet wonder when he's interested in what I'm teaching. But there are still many things I cherish when he's under the weather; like the way he wiggles his fingers when he really means "no more soup" and the smile he gives just before throwing the covers over his head to avoid cough syrup. I even charish the banging of his nebulizer on the bed when he's ready for another treatment, of course, I make a mental note to self never to give that child a bell. I guess it's good that I'm able to find some measure of joy, no matter what. If only my heart weren't so heavy.

The speech therapist came by today for our early morning appointment. I'd forgotten to email her to cancel. Her student assistant asked if she could leave a candy cane for him. That was so thoughtful. She gave one to me too. I'll save my candy cane for when we can enjoy them together or perhaps he will have them both. In the meantime, nurse mommy remains on duty, always watching and waiting for the next call to duty and the opportunity to give a tiny kiss on his slightly warm forhead. Good night my angel. May God take away all the illness and make you well.

I'll be so glad when things are back to our norm again.

Sunday, December 4, 2011

It Takes a Village

Do you remember the old adage, “It takes a village to raise a child?” Well I’m sure most of us find this statement to reign true. It’s very important for your child to know his community as well as it is important for the community to know your child.
Let me share a little story with you.
My son was born at 27 weeks gestation. He became very ill when he was about a week old. After a 3 month stint in the NICU we were able to bring him home. Just over 3 months old, weighing all of 3.2 lbs, a third of his gut removed, leaving a tiny stoma peeking out from his abdomen; mild lung decease, needing to be on a liter of oxygen and post brain hemorrhage, our primary concern was to keep him alive. We stayed mostly to ourselves the first couple years, going out only when necessary. Because Hunter’s little body was so frail and susceptible to colds and flu, he was unable to play with children or be taken around crowds. I quickly learned how to navigate our community so Hunter’s contact with people was minimal. I paid bills online, utilized drive through banking and curb side grocery shopping. I even found a little convenience store that had a drive thru window. We’d also take long, late night, out-of-the-way rides to a 24hour Wal-Mart. It was effortless turning regular errands into mini adventures for Hunter and me.
After several months, we could venture into stores during day light hours. We had so much fun. The people working in our local stores had gotten to know us well and were quite accustomed to our frequent visits. Sometimes they’d take time to play with Hunter in the aisles and give him treats while we shopped. The ladies at the deli would always ask us to stop by so they could give Hunter his favorite snack, fried okra.
When Hunter was a little older and stronger I decided to take on a part-time job. I was given a flexible schedule so I could bring him with me after hours. As Hunter continued to get better and job duties increased it was time to utilize our local Community Service Program. This is a program offered to provide a worker to take care of your child for a few hours a day, as needed. I was not thrilled about leaving my baby with a total stranger. We met a young lady who turned out to be a good match for my son. She was wonderful with him. Being a little over protective, I left strict instruction not to leave the house and provided more than enough provisions for any caregiver and child to manage. This went on for about a year. Well…I did say I was a little over protective.
One day, soon after our first year with Hunter’s caregiver, Jeria; I decided it was time to give her permission to take Hunter on a little outing at our favorite grocery store a few blocks away. Little did Jeria know that she was in line for the shock of her life. I must admit, I didn’t see it coming either, but was rather amused and pleasantly surprised.
That afternoon Jeria prepared Hunter for their little outing. As soon as they walked through the sliding glass doors Hunter was met with huge smiles and greetings, but the staff did not recognize Jeria. They’d only seen Hunter with me. It didn’t take long for a few of the cashiers to corral around Jeria and Hunter on a nearby aisle. The ladies began talking to Hunter, “Hi sweetie, are you okay?”,” Who’s this lady with you?”,” Where’s mommy?” And then they turned their attention towards Jeria. Jeria was grilled for several minutes until they were satisfied Hunter was okay. Poor Jeria had never experienced anything like that before and didn’t know what to think. She was so thankful the ladies didn’t beat her with canned goods and call the police.
When I came home to the news, all I could do was laugh and enjoy the warm fuzzy feeling of knowing that there are others out there who are looking out for my precious little boy.
Thank you village.

Life is like a box of chocolates…

I received mixed reactions when I shared news of Hunter’s diagnosis, ASD/PDD. There were those who scowled and said, “OMG, how are you going to manage?” Other would say, “Wow, he could be savant!” Over the past 5 years, friends have come and gone. And I've learned…not everyone, no matter how positive you are or how hard you try to education them about autism, will ever really understand or even allow themselves to spend a moment in your shoes. It’s just not something they want to think about and that’s okay. They may never know how rich life can be, seeing the world through autistics eyes or know the depth of love. It’s hard…I know, whether family, friend or stranger; lack of support hurts. As parents of and individual autistics we become more determined to surround ourselves with positive people who want to learn, understand and accept.
Hunt and I are very blessed to have several very good friends who are receptive to learning about autism. They openly admitt that they have no knowledge of autism and are always asking questions. They take time to talk to Hunter, even if he does not respond. Together we find ways for Hunter to know that those around him love him and accepted him just the way he is. This is why he’s so comfortable in his own skin. It took some time for everything to sink in, but Hunter got the message. He started responding to friends, who he considers family and has stated as much, by giving hugs and inviting them to his room to play. He even looks forward to sharing his contagious since of humor. What a marvelous break through.
I’ve been told it’s really very simple. Our friends see the unconditional love my son and I have for each other. After all, he puts up with a lot from me too. They know how patient I am with him and how I’m always looking for opportunities to teach him new things. Seeing all of this makes it easier for them to join in. There are some who see true happiness and really want to be a part.
It still makes me cry when I hear, “We don’t see you and Hunter being different from any other parent and child.” “You do and say the same things to him as we do and say to our own kids.” “Hunter’s so well mannered; you should share your parenting tips.” And it goes on. Acceptance and understand truly begin in home. Sure, there’s going to be a few folks that only see what they want to see, so let them. I find the general standard is when people see you totally get your kid(s) and accept whatever’s going on with them, they will accept it too.

Thursday, December 1, 2011

The Old Snap-n-Sneak-a-Peak

I would be a wealthy woman if…
I had a nickel for every time I heard “I’m sorry” when I mention that my son is Autistic. And nothing angers me more when my son is flapping or grunting then to see the dreaded sympathy stares or worse, the old snap-n-sneak-a-peak. Do you know what I’m talking about? When someone staring at your child catches you staring at them and they snap their necks straight; curiosity gets the better of them, so they strain like everything to stare at your kid out of the corner of their eye. That’s what I mean by the old snap-n-sneak-a-peak. Many of us have experienced this phenomenon and unfortunately will continue to do so, unless society takes a turn for the better and steps out of the dark ages. I’ll be the first to dance on the roof tops when that happens.
How can we be so far advanced and so far behind, all at the same time?
I could understand this kind of behavior if we were in the 16th or even 19th century, where ignorance prevailed due to lack of exposure.  In this day, with lightening fast access to all kinds of people, places and circumstance; it’s shocking society still has little understanding or tolerance for those who are outside of the box in thinking and behavior. Could it be how society’s set up? After all, this remedial remnant of societal hierarchy, you know…the us and them theory, is learned behavior. We are born, grow up, go to school, sit in our little seats and perform as if part of some collective. When we see someone act outside of what is the “norm” we point and squawk. Calling in the pod people to desensitize those gone free and real them back into the collective. If that doesn’t work, then the free ones are locked up, hidden away from society’s eye. Hard to believe we are still receptive to and capable of this sort of arcane thinking.  
How long will we have to make efforts to bring forth “Awareness?” And at what point and time will society not only be aware, but understand and accept. Neither we nor our children need permission to be Autistic or anything else. It’s time for society to hop on their hover crafts and catch up to us in the 21st century. Or better yet, we can leave them behind and form our own society.
Give yourselves a pat on the back. Do you realize that you and I are part of an exclusive club? Think about it…
As Autistics, parents and caregivers of Autistics we are a special breed. No one knows what our world is like unless we share it with them. No one could ever understand the boundless love and infinite patience that we have towards our own and others. Anyone of us can share our story and know that everyone else in our community will understand. It is within this special grouping of people that no explanations are needed. We laugh, we cry, we celebrate each others triumphs. We take nothing for granted. We should be honored that we have been hand selected to take on these special duties. We are the ones that have the courage and tenacity to survive anything that comes our way. This life, this experience has made each and every one of us better people. Stand proud! And the next time you see the old snap-n-sneak-a-peak, imagine that person being one of the collective drones and recognize that you and your family are free.

Wednesday, November 30, 2011

Coping with the Holidays

Looking at your child's life in the long term; wouldn't it be better for them to know how to cope with change, rather than having to endure countless meltdowns?

Our children need to be able to find an emotionally comfortable place in a world that is not going to cater to them or their unique needs all the time. Starting to work with your child, as early as possible, on flex routines will make transitioning into holiday and other special events much easier over time. Don't let your precious ones diffuse holiday spirits. Give them the skills they need to enjoy and even anticipate joyful occurrences in their routines. Our children have the ability to anticipate the good things in life. Let’s make it a little easier for them. All they need from us is our patience, lots of repetition and a little ingenuity to smooth out the rough spots.

As you are setting goals for your child, anticipate needs as they grow older and how they will have to navigate themselves in the world, as it presents itself to them

I am grateful for the medical staff that took such good care of my child during his early years. Even though, admittedly I’ve taken their advice with a grain of salt. There are those occasions when you voice a concern and in return you are offered a textbook remedy that just won’t work in the long term. What appears to be just right for the moment ends up causing other developments later, leaving you in a lurch. Don't get me wrong, it’s good to listen to the advice of your child's medical staff and therapists, but add your own knowledge of your child and a dash of common since into the equation.

It troubles me to see children having difficulties adjusting during the holidays, but who can blame them. 

After all, lights are twinkling, music’s playing; people running in and out of the house; pretty things you can’t touch; loads of sugary goodies to munch and then…Santa Clause falls into your house.

My family celebrates the Christmas holiday a little different. Our efforts are not so much to give and receive gifts, but being a gift to others as Jesus is certainly the greatest gift to us. And then, there are some that like to celebrate Christmas focusing more on family traditions, whatever those traditions may be. In any case, there are ways to help our children cope with changes in their routine during the holiday season.  

As a general rule, we have routines that are what I call, "flex routines." 

A flex routine is pretty simple. Have your routines in place, but make changes starting off with 1 or 2 small things and slowly increasing frequency and variety of changes over a period of time. Whatever is comfortable for your child. This will help them develop the skills to find comfort in their structure set while anticipating possible change and adjusting to change more readily.

Allow your child to have a sense of involvement in your day to day and special plans.

My son and I enjoy going out with friends and family; this was something he was accustomed to. But, when it came to having guests over for dinner or just to hangout for awhile; my son was much less receptive. We rarely had company unless it was therapists, friends for play dates or something having to do with my son’s needs. Sometimes friends would stop by unexpectedly for a visit; they were often greeted with a barrage of grunts and little things done to draw all attention to my son. This would sometimes make me and my guests feel uncomfortable. You don’t want to find yourself trapped in a world without social outlets for yourself as well as your child.

I honestly did not consider how my son would feel about my having unexpected guests, knowing that he was used to being center of attention. I had to come up with a way to flex our social routine. How did I do that? Well, I started by making a simple story board that had a picture of our home and pictures of some of the rooms in our home. We cut out pictures of people that we knew and people in general; together we placed the pictures on the story board. It was like a game at first, which was great, it kept him engaged. We would then make up stories about people coming to visit us, with and without children and things that we’d like to do. This practice made the difference in his transition to our new flex routine, enjoying guests in our home; even his ability to share our guest’s attention with me became easier.

Also, with a few simple tweaks, you can modify this practice to include events planning, such as parties or outings. Simply place pictures of people in general, yourselves or your guests, if available, on a wall calendar. Create a dialog about the event and when it will happen. Your child will be able to relate to the visuals which make the event more tangible for them. Now, there are no more surprises. Your child will know what to expect and may look forward to planning future events with you; especially for this up and coming holiday season.

You now have a creative tool to make transitioning from regular routines to the planning of events and the inevitable unplanned events, go a little more smoothly for both you and your child.

Take your time, be creative, enjoy your child and allow your child to enjoy you.

Tuesday, November 29, 2011

Grey Scale

When I was a little girl I knew something was different about me, but could not specify what it was. I could tell by how my relatives treated me. Cousins didn’t want to spend time with me or make any attempt to get to know me. I was called stupid and ignorant behind my back because I didn’t fit in socially with pears. My mother, God rest her soul, did her best to make me “normal”. It started by having me abandon being left handed and relearning how to do everything right handed. When I’d get upset or wanted to relax I rocked. I was told to stop doing that. I had to sit a certain way, talk a certain way, be better behaved then my pears. I was not allowed to think for myself and speak on it. My wants and dreams were never validated. I had been demoted from being a family member to becoming a matter of circumstance, a source of shame.
I could not understand what I was doing that was so wrong. Why did everything about me need to be changed? What was so unlovable and even unlikable about me? Why was I born? I should have been that one shot in the dark that misfired.
Over the years my quirkiness grew and my artistic ability along with it, but as my mother combated my many quirks, my ability to see life in full color spectrum dissolved. I could only see life in grey scale. With each step towards normalcy I lost a little bit more of myself. It was subtle at first but became increasingly noticeable as I grew older. Things that I loved and was good at, I could no longer do. I had become the obedient, dutiful go getter drone that my parents trained me to be; forever striving to please those who could never be pleased. Nothing I did was ever good enough. I was a constant reminder of what they didn’t ask for. I was lost and had also lost the battle. Too tired to continue fighting I gave in and ignored the fear of never being found again.
Today I’m a 46 years old proud mom to my beautiful son, who has many quirks some of which resemble my past self; blessed to survive burying my problems and free to express exactly who I am. It is only now that I speak of those things that lie dormant for so many years. It’s been a long time coming and a long road towards regaining, but the greater reward is how good it feels to finally be free and to see full spectrum again.
Take me back to the merry band of misfits where I belong.
There is where no judgments found.
 Quirkiness, giggles and stemming embraced.
 I’m back in the bosom of happiness and grace.
That which was wrong, finally made right.
Showing my son how to stand in the light.
Keep running and giggling and stemming with glee.
As for the rest of the world…simply let it be.