A Little Sleep, A Little Slumber

Ethan was here.  If you know Ethan, that is probably all I need to say.  For those that don't know him personally, let me give you a little more insight into our visit.

It was Labor Day and Ethan had Tuesday off from school.  His parents had to work, so Monday afternoon, I drove 45 minutes to the halfway point between our homes.  Danny met me there with Ethan. We grabbed french fries and a frosty, because everyone knows you gotta dip your hot fries in cold chocolate, popped in the Cars movie, and headed home.

At dinner, Ethan wasn't very hungry.  I figured either his late afternoon snack filled him up or his stomach was off.  Apparently it was the latter. He had diarrhea right before I gave him a bath.  Like the kid who doesn't realize he is about to vomit, E didn't quite make it to the bathroom.

Just before 9:00 p.m., we read some books, and it was off to bed.  Only he didn't fall asleep. This Gramma was tired, so ended up laying down with Ethan.  I dozed off a couple of times, only to have Ethan tap me on the shoulder, wave his fist in the air, asking if I'd take him to the store.  By the fifth time or so, I told him if he didn't go to sleep I would NOT be taking him to the store because Gramma would be too tired.  He lay quiet for awhile.

Believing he was close to sleep, I snuck upstairs.  A little later, I heard him trying to let the dog out. Not wanting a repeat of him putting the dog in the washing machine, I ran downstairs. He gestured to let me know what happened, but the odor was unmistakable.  He'd had another accident.

At 12:30 a.m., I was so exhausted I didn't think I could stay awake any longer.  Thankfully, one of Ethan's Auntie's volunteered to take over.  I told her that if he didn't fall asleep by the time she was ready to go to bed to come get me.  Around 2:00 a.m.,  Elisabeth was headed to bed. She had work in the morning.

Once again, I lay down with Ethan.  He couldn't seem to relax.  I dozed off, but opened my eyes to see him getting out of bed.  I watched him take a chair from beside the bed and reposition it across the room-no doubt where it truly belonged.  He crawled back in bed.  A few minutes later, he got up again. I watched with one eye as he walked down the hall.  I heard him go into the bathroom.  Good, at least he got up to use the restroom this time.

He came right back to bed with little coaxing. I must have fallen asleep again, because I awoke when the overhead light turned on.  I squinted, trying to focus my eyes when I saw Ethan ascending the stairs.  I was too tired to get up.  I waited a minute. He reappeared.  He was talking and signing that he was hungry and thirsty.  Really?  On the off chance it might make him comfortable and help him fall asleep, I was willing to get him something to eat .  He'd hadn't eaten much for dinner, and maybe his growling tummy was keeping him awake.  We headed upstairs together.

Immediately he began pointing down the hallway.  I had no idea what he was trying to tell me.  I noticed the bathroom light was on.  I pulled a box of gluten free cereal from the cupboard.  He walked down the hall, walked back and again pointed, with speech and gestures that I wasn't understanding.  Finally, I looked down the hallway.  Oh no!  His great grandmother's bedroom light was on.  Did Ethan really go back there and wake her up?

Quickly, I walked back there with Ethan in the lead.  His great grandmother was actually having a coughing fit and E had been quite concerned. So glad my own conclusions were wrong.

When we got back to the kitchen, I offered Ethan cereal.  He said no, opened the fridge and pointed to the orange chicken I had made for dinner. In a desperate attempt to get this kid to fall asleep, I heated up the chicken. It was 2:30 a.m.

 

 

He ate every bite. I took him back downstairs and we laid down again.  I pulled myself out of his bed by 3:00 a.m. He was finally asleep.  I don't know when I passed out.  I remember lying in my own bed and the last time I checked the clock it was 3:30 a.m.

Around 8 the next morning, err...later that same morning, I dragged myself out of bed.  I walk into the kitchen and who is sitting there with his Ipad?

This isn't the first time Ethan has had trouble sleeping.  This is an off and on difficulty he has had since he was a baby.  We were told this is common with kids who have Angelman Syndrome.  He was given a clinical diagnosis not proven by genetic tests. It is hard to know what sets his insomnia off.  It could have been the swelling of a mosquito bite he had on his leg that was red and hot and raised to an area of 5 inches by 3.  Or the cortizone cream I had slathered on, followed by Benadryl cream, and Neosporin. It could have been the 4 bites he had on his arms that were also raised and swelling.  Or a stomach ache, or quite simply the Bendadryl I gave him to reduce the itching and swelling.

I love you Ethan!

Truthfully,

Joanne

"Do not love sleep, lest you come to poverty;
Open your eyes, and you will be satisfied with bread." ( Proverbs 20:13)

Do You Want Fries With That?

I spent the day with Ethan. He had an accident at school yesterday so they made him stay home today. With no one else to watch him, I drove the hour and 15 minutes to be there for him.  Something most grandmothers would do if they are available.

 Ethan always requests a shopping trip when we get together. I had explicit instructions from his mother that he wasn't allowed to have any Transformers. I was okay with that as I'd seen a really cool light saber I wanted to buy him. As before, Ethan pointed and gestured at each intersection so I'd know how to get to Target.  We arrived at his favorite store 12 minutes later.  I found the light saber!

On the way home, I asked him if he'd like to stop and get food. He signed and said the word "eat."  I suggested Chick-filet or Wendy's, knowing they both carried gluten free food.  But as we passed the McDonalds Restaurant, he let me know without a doubt, that this is where he wanted to eat.  I suggested the drive-thru, but he answered with a resolute "NO."

I wasn't sure I could order food that was totally gluten free, but thought I'd try anyway. While waiting in line, Ethan was searching.  For what, I wasn't sure.  It had been a long while since I'd eaten at McDonald's.  I remembered they used to have a case where the latest Happy Meal Toys were on display.  I didn't see it.  "Ethan, are you looking for the toys?"  I was pretty sure he agreed that he was indeed looking for the toys.  I hoped I could buy the toy, minus the meal.

I ordered the two of us grilled chicken sandwiches with no buns.  The girl taking our order, seemed to get it and clicked away at the register.  I asked if they still carried Happy Meal Toys and queried whether or not I could buy the toy separate.  When I was told no, I ordered a Hamburger Happy Meal, but explained that I did not want a hamburger-just the fries, toy, and drink.

"So you just want the bun?"

Was she serious?  No, I do NOT want a bun of any sort.

"So you don't want the chicken sandwiches?"

Grrr....Yes, I still want the chicken sandwiches without buns, and also another order of fries and another drink.  She clicked away, then after I paid, she handed me a cup.

"I ordered two drinks."

"No, you didn't."  I looked at my receipt.  She had not included the Happy Meal, minus the hamburger.  Ugh!

"I wanted the Hamburger Happy Meal, but not the hamburger.  Actually, I just wanted the toy, but since I can't buy it separate, I wanted the meal, with the fries, and the drink."

She rang me up again, and I paid the full price for a little toy green guy.  In the meantime, Ethan had taken the other cup and was attempting to fill it at the fountain.  I ran over to assist him, then filled my own miniature happy meal cup with diet coke.  We went back to the counter to wait for our food.

A young man, handed me a tray with a Happy meal bag with a cheerful, "here ya go!"  I showed him my second receipt with our real food.

"Oh, we're still waiting on the grilled chicken."  He remarked.  We waited longer.  Ethan was about to make a beeline for the play room, when our food was placed on a separate tray.  I grabbed the Happy Meal bag, tossed it onto the new tray and tried to catch up to Ethan.  I tried to slow him down, "Ethan, don't you want Ketchup?"  Before I could stop him, he was up inside the colorful tubes.  "Ethan, no!  We are going to eat first, then play.  Eat first, THEN play."  I repeated.

Thankfully, he came down.  I sanitized his hands and we sat down to eat.  I opened our food, and there were two grilled pieces of chicken, sitting neatly inside glutenous, wheat buns.  Frustrated, I told Ethan he needed to walk back to the counter with me, since our order was wrong.  Why would they make the play area so far from the food counter?  It was literally 2 rooms away and there was no way I could keep an eye on Ethan, let alone see him, if I walked back to the counter.  He did not want to go, but I dragged him back, coaxing him that we'd get some Ketchup.

It took a few minutes at the counter, before the young man returned with two pieces of chicken in plastic containers, with no buns.  If I had to guess, they probably just removed the bun and tossed the same chicken into a new box.  If this had been for Elisabeth, I would have made a fuss, but I just wanted to get Ethan something to eat quick.  For the two of us, it was gluten free enough.

Ethan already had a little paper cup in one hand, and was pushing the ketchup pump with the other, but nothing was coming out.  While balancing the tray in one hand, I said, "here Ethan, let me help."  I had him put the paper cup under the pump and gave it a good squeeze.  The red goo missed the cup entirely, but squirted down his arm.  Do you think I could find a napkin dispenser within reach or even in sight?  Ethan licked his arm, before giving it a good swipe down the front of his white t-shirt.

We made our way back to the table.  After I cut up his chicken, Ethan began eating.  I watched him, watching the other children play.  He didn't smile.  He just seemed curious.  At one point I noticed his hand gesture slightly.  I looked up into the brightly, colored tubing.  A young child was laughing and waving to his mama.  I think Ethan thought he was waving to him.  In that instant,  I saw the real reason Ethan wanted to come to McDonald's. It was not for a Happy Meal toy.  He wanted a friend.  He was hoping to find a playmate, a friend to share the challenge of crawling through the plastic tubing and sliding down the slide.  Hot tears filled my eyes.  Everything within me wished he had a brother or sister, so he could have a built-in playmate.  Another child to play with, who understood him, and who didn't run the other way when he tried to join them on the playground.  I was NOT enjoying this trip to McDonalds. This was NOT a Happy Meal.

By the time Ethan finished eating, the other families had left.  After removing his shoes, he climbed up inside the maze.  I quickly cleared our table, placing the rest of his fries and toy in his not-so-happy-meal bag.  I took it with our drinks, and set them on the table closest to the play structure so they'd be easy to grab when we were ready to go.  Two times down the slide and Ethan looked tired.  He headed for the table for his drink.  "Ethan, here you go, I moved our drinks over here."  Except when I turned to get them, they were gone.  Since when did McD's become so efficient at clearing and wiping tables???

I went around the corner and caught the woman cleaning up.  "Did you just clear that table?" I asked, louder than I meant to.  Before giving her a chance to answer I let her know that my grandson's toy was in the bag she'd thrown away-the toy that cost me the price of a Happy Meal, along with his fries and our drinks.  Amazingly, the toy I couldn't purchase by itself was magically replaced for "free."  Not sure why they couldn't have given it to me in the first place, since the meal I purchased for Ethan cost much more than a silly Happy Meal.  And it would have been a much happier meal.

Feelings of Inadequacy

The past few days have left me wondering if I am a real mother. Today I took one 6 year old boy to the grocery store. I needed just a few things: milk, ham steaks, & parsley (I killled what was growing in my garden.) At the grocery store, I was distracted and harried. I forgot the milk. I walked in the house shaking my head. I asked Michael how in the world I ever took 5 kids grocery shopping week after week without losing my head.

I have had Ethan since very early Thursday morning. His mom is out-of-town until tomorrow night. He has made amazing progress in school and therapy. This should make my job easier, right? He communicates in so many ways. He is using sign language again. Ethan looks at me and gestures with his hands.

"What do you need, little buddy?"

He keeps signing. Over and over because I don't get it. I have no idea what this sign is. He says something to me sounding as if he is fluent in a foreign language. But I don't speak this language. Nobody speaks his language. He continues to plead with me via hand motions. I don't know what he is saying. I hear the frustration in his voice. I begin offering him things. Juice, toys, anything I can think of. He begins melting down. He screams. He throws his transformer car across the room. He grabs the first thing he can reach, a DVD. He bites down hard, leaving teeth marks in the disc.

I don't blame him. He has no way to make me understand. I have no idea how to parent him in my daughter's absence. I don't know how to grandparent him at this moment. I fall to my knees. It's the only place I know to go. I feel so inadequate. Caring for a child shouldn't be this difficult.

Six

Six is such a nice number. A half dozen. Lots of things come in a pack of 6, like soda. And who doesn't think six-pack abs are nice? Six Flags Amusement parks are packed with fun. But the very best thing about the number six happens today. Today is Ethan's 6th birthday. We celebrated yesterday.

I do believe this was his best birthday ever. Ethan blew out his candles for the very first time. (Well, at least 3 of them.) I had no idea he'd acquired this skill.

(This video is only 16 seconds.)

I attempted to order a Transformers cake, but the bakery didn't make any without milk. I could bake my own cake and they agreed to decorate it. Great! Did they have icing without milk? ButterCream wouldn't work, but their non-dairy whipped icing would. Upon further inspection I realized the non-dairy icing contained milk. But the buttercream icing contained no butter. I decided to make it all myself.

Hilary came to the rescue and decorated the cake for me.

Ethan was one excited 6 year old. Transformers ruled the day.

Happy Birthday to my favorite 6 year old!

Ethan's EEG Results

Ethan had his neuro appointment. Christina liked the new nurse practioner. No seizures were seen on his EEG, but it did show abnormal brain activity. This was interpreted as: the medication is keeping the seizures in check, otherwise he'd be having lots of seizures throughout the day. Good news? Bad news? I'm taking it as good news.


One of the reasons for the latest EEG, besides that he was due for one, is his OT wanted the information. She is excited about a new therapy she recently learned about at a conference. She feels Ethan is a perfect candidate. She has used this new technique with him twice, with amazing results. But in order to take it further, it was imperative to know whether or not he was having seizures. Hopefully, the latest results will not hinder him from receiving this promising therapy.


We had a rather quiet 4th of July. My inlaws were here for dinner, as were Christina & Ethan. Just 6 of us. Oh so quiet. Ok, quiet is not really the right descriptive word, as Ethan can be oh so busy. Independance Day is a day for celebrating. We have much to be thankful for in this country. Fireworks, Family, Fun, Food. Sounds Fabulous to me.

Here are a few photos taken after Sarabeth arrived home from work.









Ethan loved the sparklers. This was the first year he really got into fireworks. He clapped, cheered, & kept signing please for some more. If I'd had any idea, I'd have bought more. Next year I will. And maybe, more than 2 of my kids will show up.

8 hours, 27 minutes

Ethan didn't keep the wires attached for the full 48 hours. He was 39 hours, 33 minutes short. I'm not sure how long it will take before we know if the torture we put him and ourselves through was worth it & if significant information was obtained during those long 8 hours.

The rest of the evening he was pretty darn happy.

We finished celebrating Sarabeth's birthday.


Since Ethan couldn't eat the cake, I made him a batch of brownies during his nap. He thought he needed candles too. Twenty-four candles in the box, 19 for Sarabeth and 5 for Ethan. Perfect.

Not sure why, but after getting all 3 pairs of glasses fixed on Wednesday, he refuses to wear any of them. (Can you believe he'd broken all of them before we had a chance to get a replacement?)

P.S. Tammy, I will get back to the Early Years story.

EEG

Today is Sarabeth's birthday. Happy 19th birthday!!!!

But most of my day so far has been spent with this little guy:

Ethan, undergoing a 48 hour EEG.

Checking out his new do.

A few seconds before he began ripping the dressing from his head

As we leave the hospital the first time, Ethan stops to watch the balls in the maze. We drive out of the parking lot just long enough to look back and see that Ethan has pulled out 4 wires. This is going to be a long 48 hours.

With his head wrapped more tightly, and carrying new toys, we leave the hospital a second time.

Three hours later, 4 of us have wrestled with him, re-wrapped his head, re-attached multiple wires, and now he is sleeping.

The tech was amazed at Ethan's strength and pain tolerance. He said the glue they use is similar to super glue and a solvent is used to remove the connectors so as not to remove skin with them. He said sometimes kids pull off wires, but Ethan definitely set a record for the fastest.

I doubt we will make it through 24 hours.

Ethan Update

I haven't given an update on Ethan recently, so thought I would. First, I am giving an award to his physical therapist. I'm calling it the "Thunk Award." Not that I would ever clunk someone in the head, but if I had, I'm sure that this is the sound I would have heard. Plus she really should have "thunk" before she spoke.

The P.T. told Christina she was no longer going to be a physical therapist. She was moving on to another career. (Hallelujah!) Then she went on to say, "But I think it is a waste of time & money to keep Ethan in therapy. He isn't motivated enough. He hasn't made a bit of progress this past year, not one measurable difference. And truthfully, no he can't kick a ball, but does it matter? So he can't jump or hop, he can make it in life without doing that. He isn't able to go down a flight of stairs in typical fashion, but he can make it. So it really isn't a big deal if he gets physical therapy. He can still manage in life." Grrr....she is very deserving of the Thunk Award.

On a positive note, I'd like to offer a Kudos Award. I just don't know who to give it to. Christina received a phone call from the Autistic School telling her someone had anonymously paid for Ethan's schooling this summer. What a huge blessing!!! Meanwhile, she continues to battle the public school over his continued education. Several people in that mix deserve thunk awards too.

 Helping Gramma water

Aunt Sarabeth's Graduation

Some Days Are Just Sad

Tomorrow will be a happier day. I think it is ok to have a down day once in awhile. After a sunny day in the 70's yesterday, it is a bit gloomy here. It began raining, snowed a bit and it gray, cold, and damp. Certainly a good day to get some things accomplished inside.

I need to put my scrapbooking supplies away. I'd been searching for a photo of my mom and me. I wanted to post one for Mother's Day. I found 3 or 4 from the past 25 years. It seems it is usually my mom or I that takes the pictures. I vowed to get more soon. Here is the most recent one with my mom and dad:



Ethan was here for a few hours on Mother's Day. He had a rough week. I noticed he found my photos. Thankfully, I noticed 40 or so that he'd thrown in the garbage. He also found my fancy scissors and pens. One photo I found of both my mom and dad was ripped in half, as were a number of other pictures. I don't blame him. These things happen. I don't feel very motivated to reorganize and put things away though. I'm afraid of what else I might find.

Remember when I posted how excited I was for Ethan to attend the Autistic school? That was in December and he didn't actually start until April? I posted about how the school wouldn't pay for the the summer and if Christina couldn't come up with the difference they wouldn't accept him? Did I tell you that thanks to the tax stimulus rebate and such the money was available? Yesterday she found out it didn't really matter. The school has "changed their mind" and won't pay for him to go in the Fall, even though they had verbally said he was approved beginning last November for at least a year. Instead, he gets to attend school for a mere 3 months.

I don't understand how they can deny him. Why open the door to watch him blossom for a few weeks, then slam it shut in his face? What a crushing blow!

I'm sorry. Sometimes it is just that kind of day. But if any of you happens to win the lottery and begin feeling very generous, I know a little boy who would love to keep going to school.

Spring Has Sprung

As the temperatures soared into the 60's, I flung my kitchen window open. I breathed in deeply. Ah, the fresh scent of spring. I quickly finished cleaning up, so I could enjoy the warm, sunshine.

Ethan loves spring too. We spent all afternoon outside. He wasn't too happy when it was time to come in. I think he wanted to bring that fresh, spring air inside. In fact, I'm sure of it. I noticed the clean scent as I came downstairs. It reminded me of freshly laundered sheets, hanging on the clothes line, gently blowing in the breeze. The air inside was indeed spring fresh. Actually, it was April fresh, according to the empty bottle lying on the laundry room floor.

In his little helper way, Ethan managed to take the clean clothes out of the dryer, and place them back in the washer. Apparently, they didn't smell clean enough. An entire bottle of fabric softener would do the trick.

What a mess! It was all over the top of the washer, down the front, on the floor. Pretty much everywhere. In trying to salvage some of the blue liquid, I took 20 of my nicest cleaning cloths and soaked up the April freshness. I thought I could toss one in to the rinse cycle of the next 20 or so loads and voila! I'd have soft, static-free, nice smelling clothing.

Seriously, what was I thinking? First off, how am I to know exactly when the rinse cycle begins? Would a little timer go off in my brain, exactly 43 minutes after I put clothes into the machine? Or is my memory so superb, that I would automatically remember to run downstairs at just the right moment? Nope. Isn't going to happen.

Secondly, the blue splashes down the wallpaper should have been a clue that this was not a good idea. Once the blue stuff dries, a cold water rinse does NOT dissolve it into the creamy liquid it once was. My lovely cleaning rags are now dirty blue, and leave anti-static streaks on my mirrors. Oh, but they do smell fresh. April Fresh. Thank-you Ethan, for bringing the spring air inside for all to enjoy.

One of those mornings

The most unpleasant sound in the morning is standing in the kitchen and hearing your dog wretching behind you, while cooking breakfast and preparing lunches. Worse yet, is not hearing your dog vomit, and slopping in it while wearing fuzzy slipper socks. Ugh!

Let's see...we are on day 21 of this same, stinkin', virus.

Have you ever been called for jury duty? Michael has been wondering why he has never been called. He would really like to have jury duty. A few weeks ago, he received his official notice. Just 2 more weeks and maybe, just maybe, he will be a juror.

Oh, and a week later, I received a jury summons for the Superior Court. Makes me feel, um, superior. It is for the month of May. Let's see, what do I have going on in May...that trip to North Carolina, a graduation and all of the events leading up to it like banquets, baccalaureate, plus all of the end-of-the-school events crammed into the month. I too thought it would be fun to be a juror, now I'm not so sure.

Lastly, this is Autism Awareness Month. I've been spending a lot of time researching autism, and another not-so-well funded or publicized syndrome: Angelman's. Christina took Ethan to the geneticist last week, like she does every year. Each time, it is a new doctor. This doctor remarked that the last geneticist had clinically diagnosed Ethan with Angelman Syndrome.

When he was little, Ethan seemed like he fit this syndrome. He was tested. A defect was found on the same gene, but not exactly the classic defect for diagnosing it. To rule it out or make a diagnosis based on the results, the geneticist requested both parents be tested for this abnormality. If neither parent had it, Ethan would most likely be diagnosed as having Angelman's Syndrome. If one parent had this same defect, and since neither parent has Angelman's syndrome, it would be ruled out that this was the cause of Ethan's issues.

Christina had the test done almost 2 years ago. She did not have the mutation. Ethan's father refused to have the test. Thus, I believe, the reason for Ethan's clinical diagnosis of Angelman Syndrome. (Last week was the first time we'd heard this as his diagnosis.)

It doesn't really matter one way or the other. Ethan will forever be my little angel man.

Spring Break In Pictures

(Due to my continued battle with this illness, I didn't get photos of everyone.) I did, however, enjoy every minute of having all of my kids here and Ethan too.


Guitar Heroes




Boys & Computers




Mmmmm...Popcycles!



Denver Nuggets Game

Making & Eating Brownies
(My apologies to my 3 kids who didn't make it any photos, and for not getting any Dance, Dance, Revolution Pics.)

A Nice Surprise-Not

In early December, you may recall I was pretty excited. I posted that Ethan was finally going to get the extra help he needed. He was to begin attending an autistic school. Can you believe he hasn't started yet?

Christina was told it would probably be February before he actually got in...you know the logistics, evaluating Ethan to see what his needs are, hiring a teacher, blah, blah, blah. But nothing happened. It gets sort of confusing, something about another child took his spot, he's next on the list...you get the picture. I'm wondering the whole time, what good does moving him so close to the end of the school year??? And what is taking so dang long?

Finally, a couple of weeks ago, Ethan was evaluated. Then came a meeting with the school district head honcho, who holds the power cards to approve, disapprove, allow, disallow-the one who holds the purse strings. The meeting also consisted of the director the Autistic School so she would know what exactly what head honcho was going to allocate for Ethan. It was during this meeting that Christina found out funding was approved for the remainder of the Spring semester, and for the Fall and Spring semester of next year. Sounded great. There was only one problem.

The Autistic School is year round. This means for 5 weeks this summer, there are no funds for Ethan to attend school. The new school said it would not be conducive for Ethan to start and then be absent for 5 weeks. If this was the case, he would not be accepted into their school. Translated: Christina needs to come up with a couple thousand dollars or so, in order for Ethan to attend his new school.

Isn't this a nice surprise?

Please?

I heard commotion in the kitchen. I'd gone grocery shopping, but hadn't put away the dry goods yet. It sounded like Ethan might be helping. I came into the kitchen to find him at the table. A wooden spoon in one hand and brownie mix, bowl, and cake mix, on the table. How could I say no?
















I convinced him we didn't need both boxes, and I helped him choose the brownies.





















Do you think he'd like a kitchen set for Christmas?

 

A Christmas Gift

Kindergarten. A delightful time for a child to develop a love for learning. With new experiences unfolding, it's a time for best friends, reading books, recess & riding the bus with classmates. Kindergarten is meant to be a positive time in a child's life. This hasn't been the case for Ethan.

Ethan had a great summer and was making remarkable progress cognitively. We were excited for his Kindergarten experience to begin. He was ready to learn. His excitement at seeing the school bus the first morning was refreshing. A few days into his school year, the joy was gone.

It became painfully obvious that Ethan's teacher was ill-equipped for the job. She had no qualifications to work in Special Education, in fact, this was her first year teaching. At one point, she admitted taking the job in order participate in the "Loan Forgiveness Program," to pay off her student loans.

The class was chaotic. This teacher had no identifiable schedule for the classroom. No routine for the children to learn. One morning she might gather the kids for calendar time, the next day it would thrown in during the last part of the day. Ethan had disturbing behavior changes, along with other very concerning incidents. He came home with handprint bruises on his arm.

Because of his extra needs, Ethan's CNA worked with him at school several days a week, and was there to help him with lunch. She reported serious concerns with classroom activities. The following week, the school stated Ethan's CNA could no longer attend class with him. They also refused to offer him an aide to take over caring for his needs.

I can't tell you how many tears I've shed, or prayers I've prayed over this situation. I went to meetings with my daughter with the principal, school social worker, special education director, therapists, etc. on more than one occasion. It has been a nightmare.

The teacher was fired. A substitute brought into the class. Next, the preschool teacher was brought in as a temporary teacher, while they certified the new teacher. This teacher had been a consultant brought in to assess the situation. She was horrified at what she saw, having been a veteran of special education for 30 years, but recently retired. She took over as the new teacher the first week of December. She lasted 4 days, then resigned. Another substitute is the current teacher. The children in this class have lost the entire semester. Ethan has regressed. He not only missed out on anything productive his first semester of school, he lost more than an entire year of positive progress developmentally, behaviorly and cognitively.

This is unacceptable. I'm proud of my daughter. She has fought for her son, researched, made phone calls, attended meeting after meeting, sought out help from every imaginable place. As a single parent, she doesn't have the option of homeschooling or sending Ethan to a private school. On Thursday, she met once again with a team of "experts." She put together an amazing list of Ethan's needs, where the school has failed, what the law requires and more. She presented her information to all present at the meeting. The superintendant, who last month refused to give Ethan a full time aide, conceded. Ethan is now authorized to attend a private, autistic school-with a one-on-one teacher ratio. We are elated. Ethan has the chance to have a wonderful school experience. In a school that not only understands and accepts his disabilites, but he will attend a school designed spefically to work with his special needs.

What more could I ask for Christmas than this? We've been given a treasured gift for a very cherished child.

Seeing Is Believing

Glasses for busy, little boys are hard to find. They are expensive too. Ask my daughter. Ethan's first pair of glasses didn't last long. Once or twice a day, the lenses would pop out. The eye glass shop said there was nothing he could do and suggested a specialist in children's eyewear.

Four hundred dollars later, Ethan had his second pair of glasses: a lovely blue, flexible frame with non-scratch lenses. The clerk assured us of the durability with the guarantee that they could not be broken. If the lenses were scratched or anything went wrong, they would gladly replace them within the year. Their confidence in the frame was a 2 year warranty. I'll admit, they did stand behind their promise. But by the ninth time replacing the glasses, the clerk didn't seem nearly as cheerful.

The difficult part about replacing the glasses is, it takes 7 days. Ethan has to look through huge scratches, or wear misshapen frames until then. This weekend, though, he rendered them unwearable. He spent a day without his glasses. The strain on his eyes caused them to stay crossed most of the day. We set out to find an inexpensive replacement to wear, while waiting for the new ones.

Christina explained the situation to the optician. He smiled and reached for a small pair of glasses. "These are indestructable, built out of titanium-made especially for boys who are tough on glasses. I assure you, if he can bend them, I can put them back to their original shape. Look, they are flexible and nearly impossible to destroy." Christina nearly laughed in his face. She restrained herself and asked, "do you have a replacement guarantee?"

"Oh absolutely! For an additional charge of $30, we guarantee the lenses for a year. But like I said, the frames are indestructable."

"So how many time will you replace them if they do become damaged?"

He stammered a bit. "Well, just once."

Nice.

November 14th

Sometimes, I forget birthdays and important dates. But I don't think I will ever forget this one. This is the 6th anniversary of the day I found out I was going to be a grandmother. It was this day that I first began praying for Ethan. None of us knew at the time if he was a boy or girl. We didn't know that he would be a special child, with special needs. We had no idea the joys and heartaches that were waiting. But God did. He knew Ethan would need lots of prayer and planned for it.

Since I began blogging this date has come up before, so instead of coming up with something new, I'm going to share this story again from December of 2 years ago.


UNEXPECTED

Two days ago, I ran into Barnes & Noble for a last minute gift. I was sending out a Christmas package to my parents and it needed to go out that day in order to make it in time for Christmas. But I can't go into a bookstore without stopping in the children's section, or browsing through the clearance books. This day was no different.

I picked up a copy of Billy Crystal's "I Already Know I Love You." I read a page or two, then flipped a few more. Without warning, my eyes began to fill with tears. I blinked to hold them back and felt a stinging sensation. The author described the anticipation of waiting for his grandbaby. He was looking forward to playing peek-a-boo, & taking him to his first ballgame. I turned to the last page.

"I'm going to be your grandpa, and I can hardly wait."



I was not prepared for the intense emotion that swelled inside. I turned the book over. The sticker read $16.95. I can't pay that much for a book right now. But I tucked it under my arm and walked to the counter to pay.

I busied myself with watching shoppers wait in the checkout line. I chuckled to myself when I saw an employee at the front of the line holding a basket. She was offering chocolate candy for all who'd been standing, waiting to pay for their books. (They apparently agree with me, that chocolate should be admistered for stress relief.) As I passed, I accepted her bit of chocolate.

The day was a bit chilly, so I hurried to the car. During my brisk walk, I mentally tried to figure out what else I needed to do after my trip to the post office. I was frustrated. Why did I always and consistently leave things to the last minute? I quickly jumped in the car. While I was pulling out of the parking lot, tears unexpectedly began blurring my vision. I swiped at my eyes with my leather glove. Not very absorbent.

What is wrong with me? I wondered. I do not cry easily. I've never been an overly emotional person. But here I was, crying on the way home after picking up a children's book. I normally analyze things like this. I like to know what exactly triggers such a strong emotion. When I am very busy, or under stress, I can't say that I am always in tune with my feelings. I like to tuck them neatly away, until I have time to sort through and process. I can deal with it and move on. Right then, I didn't have time.

I pulled off my gloves, grabbed a tissue, and dried my eyes. I tried to focus on all of the things I needed to do, but I couldn't distract myself. And what was I going to do with this book anyway? I was going to give it to my husband to give to our grandson for Christmas. The image of the two of them on Michael's riding lawn mower settled into my thoughts. I cried harder.



When our daughter announced her pregnancy, it wasn't at the best of times. She had made a stand of purity and chose not to date in high school. Here she was, at 20, unmarried, telling us the news.

She had friends who told her it wouldn't be convenient to have a child and that she didn't have to. But like me, she values life. She was going to be a mom. Michael and & I were going to be grandparents.

When I arrived home, I picked up my bag of books and went inside. I tried to put the book aside while I packed up the box I needed to ship. I found it hard to function with tears just under the surface, stinging my eyes. I got the book out to present to Michael. I went to him, but found I couldn't speak. I just stood there, holding this book. I opened my mouth, but the only thing that came was tears. I waited. This was too hard. I finally blurted out, "I got this book for you to give to Ethan for Christmas. I know it was dumb, but I did." Hurriedly, I retreated to my room to finish the package.

Why am I such a wreck? I thought back to when my daughter was pregnant. I remembered that although we hadn't anticpated being grandparents yet, I dreamed about spending time with this new little one. I imagined things like baking cookies together, the laughter we'd share. I bought lots of books to read to him. I thought of the times I'd answer his questions of why, and tell him about God who created him. But I never imagined that Ethan might not understand these things, nor that there would be so many unknowns. I didn't think that at age 3 I'd still be waiting to hear him say, "gramma."

Michael came in the room. He wrapped his arms around me and I cried into his shoulder. I told him I didn't know what I was thinking when I picked up the book and that I would take it back to the store. He said no. We sat in silence. Once again I dried my tears. "Do you think I should just give it to him, or what?" He asked. "Aren't you afraid he will ruin the book?" I told him it would be ok. He could sit and read the book to Ethan. It didn't matter that Ethan didn't understand a word of it. The words were still true. We DID wait with much anticipation for his arrival. We did and still do look forward to spending time with him, teaching him new things, sharing and experiencing moments together. It is just different than what we'd imagined.

I heard the familiar fumbling, rattling of the doorknob, bumps and clunks. The door swung open, banging the wall behind it. Ethan, Christina, and large puppy Dazy had arrived.

I was sitting on the couch. As usual, I waited. After a few moments, I see the little boy face peek around the corner. I probably shouldn't, but I began wildly waving, "Hi Ethan! Come see Gramma!" And as he typically does, he ducked back around the corner. I can hear his little feet pounding down the hall to the bedroom. He isn't really shy, but this is his routine.

I wait. He doesn't come out. Uh, oh...I forgot my part. I knew it was coming, and yet I hadn't remembered. I have a closet in my bedroom, where for years I hid Christmas presents. While out shopping, I almost always come across a little something I know Ethan can't live without. A spiderman shirt, power ranger action figure, or a book about cars. At first I was saving them for an occasion, but Ethan wandered in there one day. Ever since, the first place he goes when he gets here is the closet-looking for a treat.

Earlier in the week, I'd gone to see him and bought him two games. That threw me, & I hadn't purchased anything else. I jumped up from the couch to see what he was doing. If he doesn't find a treat, he makes up his own. A new roll of wrapping paper becomes his sword.

I hear giggling and laughing. I find him on the floor, flipping through the toyrus catalog. I'd pulled it out of the Sunday paper, thinking he might like looking at it. He was enchanted.

"Come show Grandpa what you found." He continued his silly laughter, pointing to various toys. It was a great game. I tried to coax him from the room, but he couldn't be bothered. I went back to the living room to wait, calling to him occasionally. Finally, I hear muffled movement from the hall. I look over to see Ethan crawling on his knees. His hands held the pages open, as he pushed the magazine along the floor, squealing with delight. He must have tried to carry it, but couldn't hold it open and walk too.

We sat together as he pointed out his favorites. What joy it was to see him so contented. You'd think the pictures had come to life watching him touch each one. This was the best present yet, and it was free. His favorite page? It had both spiderman and transformers and with it the cheeriest chuckle I've ever heard.

Beginnings



Sigh. This school year has not started well for Ethan. I've mentioned this before. Christina was at the school helping him eat lunch. The teacher came over and announced, "Ethan didn't have a good day." She went on to explain that Ethan had pulled the principal's hair and wouldn't let go. And the worst part? She was "so embarrassed." Embarrassed???? For what reason? Was she appalled at his behavior, ashamed of Ethan,or was she mortified because she, as his teacher, was clueless as to how to deal with the situation? I sure hope her embarrassement was a result of her own inadequacies and NOT by my precious grandson. How could this little boy humiliate anyone?




By the way, Sunday began Deaf Awareness Week. It is my desire to learn ASL in order to be able to communicate with the those in the deaf community. Every individual should be able to hear the Gospel in his own language. This sign goes out to all, but especially to Ethan:



I love you

Ethan came off the bus with his hand wrapped in guaze. He must have tugged & pulled, attempting to get it off. The tight wrapping was causing redness & swelling as it was restricting blood flow. Christina asked the bus attendants if they knew why Ethan's hand was wound with guaze. They didn't.

It took a bit of work, but she removed the dressing. She found a small area that was irritated and bleeding a bit. Since Ethan can't tell her what goes on at school, she retrieved the notebook. It stated that Ethan had been picking at his hand until it bled. A bandage was applied, but he pulled it off. Guaze wrapping was then secured around it.

Picking at himself is not behavior typical to Ethan. Christina looked more closely at his hand. She noticed a protrusion. It was a tiny piece of glass or hard plastic. She pulled it out and Ethan was fine. He had merely been trying to remove a painful fragment from his skin which was the real cause of his bleeding.

I can't help but wonder what other situations does the teacher write off as odd behavior or "just Ethan" when he has a legitmate need but is unable to communicate. He doesn't eat his lunch is it assumed he isn't hungry when actually he wasn't able to pick up his burrito and bite into it. He needs it cut in pieces that he can manage with a fork. Or what about the teacher assuming he refuses to participate in the songs and finger plays, when he just can't get the hand movements on his own? He isn't capable of singing or the hand movments.

I could go on about incidents that have happened in the short time Ethan's been in kindergarten. Starting school should be a positive experience to encourage lifelong learning. Ethan has not have a positive start. This gramma is very sad.