Thursday, October 30, 2003

When This Picture Was Taken...

The picture above was taken at the Special Olympics in April 2001. First grade. I like this picture for several reasons. I love the way, you can only see Stephen’s adorable face and smile, because he was wearing a hooded jacket. I remember that it was really cool and windy that day; that is why I have his ears covered with the hood. This was a happy day. A happy school year. The moment this picture was taken, we had no way of knowing the struggles we were about to face the next school year, with the school system. Second grade left scars. Physical scars on Stephen, and emotional scars on my heart. That year, he didn’t participate in Special Olympics. Why? I do not know. Maybe our county didn’t have it that year. If they did, his teacher didn’t let me know. The teacher he had that year was more interested in trying to talk me into committing Stephen into a mental institution, or transferring him to another school that was better equipped to “handle” him. I’m terribly ashamed to admit this, but she almost had me convinced. She nearly had me convinced that there was no hope, that he was only going to be a burden that I couldn’t carry. Well, Stephen and I have proven her wrong. She considered him a burden because she was (and unfortunately, still is) in the wrong profession. I do not consider him a burden, because - I love him.

When this picture was taken, I didn’t know that we would be burying my grandmother one week later. When this picture was taken, my health was already deteriorating and I just thought I was coming down with a little bug. Another reason I like this picture is because, I was truly happy that day. My smile was real, not forced. Stephen hasn’t learned how to conceal his emotions. If he’s happy, he smiles. If he’s sad or in pain, he cries. If he’s mad, he screams. Mostly, he just smiles J

Today, he is home, sick-again. He’s watching TV, and he is smiling, embracing his lamb chop puppet. I have managed to force a smile or two. It’s just that I know how susceptible he is to pneumonia, and I am worried. The congestion is thick, and he’s coughing a lot. He might miss Halloween and he’s been so excited about it. But, he won’t complain. He'll smile and give out candy. What a guy!

Monday, October 27, 2003

Communication::Part One

The above pictures are examples of how Stephen communicates. We have many more, with different pics on them, including his favorite restaurants and foods. This is called “picsyms” They are 2x2-laminated cards and I keep them on a huge key ring. Also, at home I have the same pics with Velcro on the back of them, with the other part of the Velcro on a long board that I keep on the fridge. This is Stephen’s routine, or what you and I would refer to as our, “to-do-list.” Our evening routine looks similar to the above pics and I never use over 4 or 5 at a time. I always type the words below the picture so he will learn to recognize the word in print in association with the item in the pic (I am forever hopeful that he will be able to read someday). For example: if we are going to have bathroom time, read a story and then play a computer game, the list would have the pictures on the board that you see in the above picture. After he has completed each task, he pulls it off of the board and puts it in an envelope labeled, “finished.”

Continued Below:

communication:part two

 Last week while in special needs parenting support, a couple whose child has verbal communication skills asked, “How do you know what he wants?” Most of the time it is a guessing game. Stephen has learned to gag very loud if possible, in courtesy of letting me know he is about to throw up. Up until about a year ago, he would just look at me and whine. It wouldn’t be until after he’d thrown up all over me, I’d say, “oh, you’re sick on your stomach, I get it” I am currently trying to find a picsym for, “I have to throw up” without it looking so gross. J

Until I found a way to make the cards, I would cut pictures out of magazines, and newspapers, then put them in a small photo album. I also used to cut up boxes of cereal, crackers, and other favorite snack foods of his for him to choose from. We still use a baby monitor so we can hear him in the middle of the night if he needs us. Also, we've had to install locks on the doors to prevent him from getting out, and hurting himself, such as going outside and playing in the street! Which has happened, btw! I can't describe the panic I felt, and then, the guilt afterwards. I have several friends who have neuro-typical children the same age as Stephen, and it amazes me to watch them do things independently and have conversations with them. I sometimes wonder what he would be like if he were not trapped in his own little world. In 2nd grade, his teacher started complaining about his behavior, and we tried to tell her that in children who cannot speak, behavior is communication. We have to do assessments when these behaviors occur.Step back, observe and try to figure out what his behavior is trying to say, or it cannot be corrected. (Remember, Helen Keller?) But enough of that.I am thankful that he is learning to communicate with PICSYMS. We have found that his receptive skills are far more advanced than his expressive skills, but we are working on that, through gestures, and the pics that you see above. I imagine it is a comfort to know, “if I point to this pic, mom will take me to McDonald’s!” I’ll have to cont’ this later, darn this 2500 limit!

About Nagging

I just wanted to comment that I was so amused by all of the comments and e-mails concerning the below entry on nagging.  I got so many hilarious e-mails on this subject, it kept me entertained all weekend. Thanks you guys.. (or, gals - rather) Man, did I strike a nerve with that one! Whew!


I am somewhat back to my normal self, if there is any such thing as normal for me... except, I now have been having to lay around b/c I hurt my back yesterday while trying to pick Stephen up. Before you ask, he is very ambulatory, but his balance is still way off and he receives physical therapy. But, he still needs our physical assistance with getting on and off the toilet, getting in and out of the bathtub, etc. So, here I sit with a heating pad on my darn back as I type this. So... it's off to bed for a little while with Advil and my heating pad.  Again, thanks a million for all of the e-mails and all, you guys had me laughing with some of your stories. And yes, I promise to stay ssshhhhh hush, hush about them, LOL! 

Oh, PS~ Wish Stephen luck! Tomorrow is Special Olympics Soccer Blast!  We'll take lots of pictures! Take care..

Thursday, October 23, 2003

Nag, Nag ...Brag

That's me. The one on the left. Yep, the truth finally comes out. And you all thought you knew me so well, as that sweet, little ol' southern girl. I feel I can be honest here; I am going through MENopause, I am PMSing, I have the crud, and I had a sudden attack of my "mystery illness" today, and had to stay in bed till time for the bus to bring Stephen home. We all know how dear Stephen is to my heart, so I pour all of my frustrations out on the other guy. The one on the right up there. (my husband) Most of the time, I really am that sweet southern girl. But there's a few days out of the month that I am, let's say,  a little hard to live with. (ie) Tues. night: I hate evenings after Stephen is in bed. That's when I get really busy. I have to pick up through the house, finish laundry, pick out his school clothes, pack lunch- you get the picture. I have these cravings when I am pmsing, like you wouldn't believe! I wanted popcorn with (real) butter. So, I microwaved some while I packed Stephen's lunch. After doing a few other chores, I finally was able to get my popcorn, go to bed and watch "Everybody loves Raymond" the only tv time that I have! Well, when I turned around, my hubby was sitting on the edge of the bed, eating my popcorn, watching the speed channel! That is about the time that photo up there was shot. Mm, hm. Over a stinkin' bowl of popcorn and the tv. I was so sick last night, I didnt do a thing, I went to bed after journaling ;P This morning when I got up, hubby had made my coffee, with my fave mug ready, had Stephen's clothes picked out, backpack ready to go, lunch packed, and Stephen's meds and b'fast ready. When I turned the tv on, he had already put it on Stephen's fave channel! Could he have been more thoughtful? But my question is this, why do I have to turn into that chic in the picture up there to get all those favors? Can anyone answer that?

Wednesday, October 22, 2003

The crud

Hello all.  This will be a quickie, because we have the crud right now.  Paul and I.  As most of you know, Stephen had it last week.  Now, it's our turn. :( Blahhhh! 
I will get out of bed as much as possible tomorrow and sneak in here to check on you all, on my way to the bathroom, kitchen, etc...  don't you know I would have to be on my death-bed or worse to not do so?  I know, I need professional help, don't I? Maybe it's the flu meds I'm on, but I just feel the need to say, "I love you guys!" lol- Slo---RUSH up here and bring me a  big pot of your potato soup! If you leave right now, you can be back by morning! Hee hee hee! Yep, the cough meds make me silly!  Sorry, I couldn't resist bringing it up one more time.  Don't worry. Soon we'll be picking on someone else. ;-P

But, for real... We really feel like crap... how on earth did my baby feel like this last week and manage to be so sweet and smile all the while? Love that little guy!

Take care!

Tuesday, October 21, 2003

Today would have been Mawmaw's 90th Birthday

Your 2nd birthday in Heaven. Our 2nd year to bring flowers to your grave in remembrance. The 2nd year we have missed you, terribly. I was remembering today, the last time we celebrated your birthday with you. Although weak, you ate a large barbecue sandwich with fries, and a big piece of lemon meringue pie at Bob Sykes Barbecue. Remember? You said, “Oh, Lord, I don’t think I can eat all of that. I’ll have a piece of that pie too, please.” I giggled, but made sure you didn’t see. You finished every bite, and I just knew that was a good sign. I mean, your appetite was good. I didn’t dream it would be your last birthday with us. I saw the picture at mom’s house this morning, that we took that day. You looked fragile, but still had that feisty sparkle in your eye. What a strong spirit God instilled in you. Papaw used to say, “God won’t allow more on you than you can handle.” God sure must have thought you were strong. By age 49 you had buried 4 children. How on earth did you do it? I freak out when Stephen has an asthma attack. You were there when he was born. I wish I had listened to you when you told me that I was going to have him early. Maybe things would be different. How did you know? You had delivered more babies than the county Dr. in your day. Mothers begged for the Dr. to go get you. That story always made me laugh. You were a servant to everyone. Took care of the sick. Fed the hungry. You were always there for me. When Papaw died, you comforted me when I ran to my room and cried. Somehow you comforted a child who’d just lost her Papaw, and you were strong enough to do it without crying, yourself. But I saw you cry when you kissed him for the last time, and begged them not to close the casket yet. I’ll never forget that moment. I was 10. I always knew you loved Papaw, because you were married to him. That was all my mind and heart could comprehend at that age. That was the first moment in my life that I felt someone else’s pain. The final time I kissed you, before they closed the casket, I felt that pain again. I gave you an angel from Stephen, leaned over, kissed you and said, “give Papaw a hug for me, and I’ll see ya’ll when I get there.”

Friday, October 17, 2003

It's the weekend, let's get silly!!!

                                     Title of Picture ::Drunk Pumpkin::

One of my best-buds sent this to me last year, and I can't help but laugh every time I see it! If only I were talented enough at pumpkin carving! Well, I'm not (darn it!) I got sick and tired of cabin fever last night, so we got Stephen ready and carried him out to the car so we could ride around and look at Halloween decorations. Poor lil guy fell asleep and missed most of the really good ones in the "rich" neighborhoods. -lol- (we live in the country with very few neghbors who decorate for Halloween) I'm just amazed at how people go all out for Halloween now days. They were awesome! When I was little, we only did a single, carved pumpkin and candle on Halloween night. That was it... Now, wow!  Anyway, Stephen and I both enjoyed the riding and the looking.  It did us both a lot of good to just get out of the house for the first time in days. Hope you all have a good weekend, I'm going to try to stay offline as much as possible. (yeah, right)

Wednesday, October 15, 2003

*SMILE*

I remember as a little girl, my mother was (and still is) a Nat King Cole fan. This has always been one of our favorite tunes. Hearing this song, I can close my eyes, and almost feel my head leaning on her shoulder again, as she played the piano and sang this song to me when I was sad, or had to stay home from school, sick. Today is day 5 that Stephen has been sick. Although I can’t play the piano or sing like mama, I play it in the CD player for him. As you can see, he is one who *smiles* no matter what. He is in bed sick, and yet he smiles. I am smiling too as I type this, though my heart is aching..

Smile

Smile, though your heart is aching.
Smile, even though it's breaking.
Though there are clouds in the sky,
You'll get by...

If you smile through your fears and sorrow
Smile and maybe tomorrow
You'll see the sun come shining through--for you


If you just light up your face with gladness,
Hide every trace of sadness.
Although a tear may be ever, ever so near.

That's the time you must keep on trying.
Smile, what's the use of crying?
You'll find life is worthwhile
If you'll just smile





Monday, October 13, 2003

artist in the making

Stephen is becoming quite the artist!  I have a chosen few that I have framed and replaced my other wall decor with.  We also frame them and give to his Nonnie and Papaw for gifts.  We look forward to see what his little hands are going to come up with next.  This is from last week, and we wanted to share it with all of you.  Nice, huh? ;-)  Wow! I've got to run...  Stephen's dad just told me to get Stephen ready, and he'd get him out of my "hair" for a while. (when he's sick, he sticks to *umma* like glue. (He says umma for mama) Daddy is going to take the little fella to the bank with him, and then for a ride.  Now, I can get some housework done.  (thanks, daddy!)

Thursday, October 9, 2003

Last year: Clifford the Big Red Dog

We haven't decided yet, what Stephen is going to be this year. Last year, he made the choice.  Every tiime we went to Wal-mart, and looked at the Halloween stuff, he would go wild when he saw the Clifford costume!  So, last year the choice was easy. He will not wear a mask, so that is out. I'm really surprised he wore the clifford head-piece. He hates caps, hats and sunglasses. Will NOT wear any of them.. Any ideas? ....

Tuesday, October 7, 2003

by the way... thanks

Thanks everyone for your kind comments regarding ..."Tears for Stephen"  I will try to stay more upbeat. But sometimes, you've just gotta let it out. Thanks for all the kind words!

It's beginning to look a lot like....Halloween

I thought I'd introduce you to another member of our family. Anyone who knows me will tell you, I've never been a cat person. Always a dog lover (still love dogs) We live sort of in the country and have a lot of trees around us and the neighbor's cow/horse pasture is just on the other side of the fence. We are way off of the main road. This month is the anniversary of two years ago, a sad little cat found her way to our doorstep on a chilly, October evening, starved to the bone. We gave her a can of tuna, and she has been here since that evening. Her name is Puzzle, and so far, will not let us get a picture of her. Patches is her baby, the runt that we sort of got stuck with. She wasn't the prettiest kitten out of the bunch, and was the only one we couldn't give away. She doesn't have a lot going for her, in the looks department, but she makes up for it with her personality. Stephen loves both of the cats, especially their tails. I can't say the feeling is mutual, however. But, we feed them well and I suppose that is reason enough to stay here.

Monday, October 6, 2003

Friday night marshmallow roast

To level things out a bit. I have to say we had a really nice weekend. For the most part, we did enjoy Saturday at the park.  I'm getting a little better at trying to understand people.  Stephen had a blast! ...and that is really all that matters.  Sunday, we went to a Fall Festival with my brother and sister inlaw. We all had a nice time, the weather was most pleasant, not too chilly, not too hot. Had a nice visit with my parents, and the Friday night, backyard marshmallow roast! It's really hard to say who enjoyed that the most. Stephen, or his parents, lol! 

Tears for Stephen

Saturday was Family Day for our church. It was held at a local park. We’ve only been back in church for 4 weeks, and we thought this would be a good time to mingle with the other families and let Stephen get to know some of the children better, and vise versa. Stephen and I were standing with the Pastor, making general conversation, when another little boy walked up. This excited Stephen to death. So much, that he started vocalizing and walking in his awkward, unbalanced way to the little boy, and tried to pat him on the back. That is Stephen’s way of saying, “Hi! My name is Stephen, want to play?” Understandably, the little boy began to back away from Stephen, a little frightened by his enthusiasm. This, I can understand. He had probably never met a mentally challenged child before. But, what bothered me is this; the little boy’s mother, rushed over and pulled her son under her wing to guard him from Stephen, and then, walked away from us, giving us a disgusted stare. The Pastor said, “oh, it’s okay, he was only saying hello!” They kept walking. I had to bite my lip and take a deep breath to hold back the tears. By this time, Stephen’s dad had walked up with Stephen’s soccer ball and off they went. I stood there, and watched them play (alone) and my heart was breaking for Stephen, b/c everywhere we go - he is ignored. If only I could be as accepting as he is.. For he never noticed, and his feelings were not the least bit hurt. He kept smiling - as I cried. Not only for my son’s sake, but also for one little boy, who because of his mother’s ignorance, missed an opportunity to meet someone as special as Stephen.

Friday, October 3, 2003

Speaking of bedtime routines

I am really baring it all here... Well, not "that" way. But for me to allow people, other than family to see me at my worst... I almost didn't add this picture. But, even though I was sick with a temp of 103 and feeling my worst physically, it is one of my sweetest memories of early this summer. We'd spent the day at my brother's house, swimming. I didn't really want to go b/c I was having another one of my "episodes" with my health. (I won't go into all the boring details of my 2 1/2 yr. mystery illness. I don't want to ruin the moment, here.) Swimming means everything to Stephen in the summer. So, I took 4 advil, said a prayer and went. I was really paying for it by 8 PM. I was too sick to get out of bed, and read Stephen's bedtime story, so his daddy brought him to me. You can see on Stephen's face how he was soaking up every word, like a sponge! He may be delayed, special ed., or whatever his label is. But, anyone who loves reading, or  being read to, has something going on in their mind.. not just a blank space.  His daddy thought this was a kodak moment, and in spite of my pitiful image, Stephen's image is worth it all. He is non-verbal, but this picture, to me says a million words.

Thursday, October 2, 2003

Bedtime Routine....

It's after 7:00, that means, the supper dishes have been put in the washer, and Stephen and I are having computer time before bathtime, which is then followed with his bedtime. THEN..... finally it's mommy's *Me* time :)  If I'm able to move after all of this, I'll try to make another post, and get around to visit all of my favorite journals! 'Til then, y'all take care!

Wednesday, October 1, 2003

Stephen's 1st car date!

This pic was taken back in the Spring; you can see what a happy time indeed it was for Stephen! His friends name is Stephanie and she lives 2 doors down. She's an older woman. She's 12!!  Amy, I'm trying to add the pics the way you told me to, so far it's working! Thanks a million for the tips. I haven't been patient enough to try adding them to the sidebar yet. Anyhoo.. I'll repost that personality test site thing again. I wanted to go back to that site and take another test. Or... maybe use some different answers, so it won't tell me I'm a loser this time. ;-P  Been really upset by that...

Lost entries? Where did it go?

This is weird... I've lost my entry that I made earlier today... Hmm, Go figure.  Maybe I did it while I was  trying to add photos earlier. Oh, well.. I'll try to make another in a while. Time to feed the family.