It Just Makes Sense

"It just makes sense." That is what Amanda said this morning about a plan that I have four 4 man scramble team. I'm glad she likes the way I think when it comes to important matters such as this. I also like that she used that expression for the first time that I know of. She is making great progress.

But to keep it in perspective, I am also aware of how much easier it is for the average four year old to speak. Without software to hardware interface issues like Amanda's, they simply say just about everything the want to. It doesn't necessarily make me sad when I hear how much easier it for children a third of her age speak so much more clearly. It just makes me acutely aware that my little one just must put in the extra effort to get her thoughts broadcast to her audience.

I truly compare it to me doing upper level algebraic calculations. Anyone who knows my track record with algebra would probably argue that statement. Their argument being, "But John, Amanda can speak to the point of understanding, while your abilities in Algebra 4 were what you could see on other people's paper. "

Small class and a small victory

Amanda is back in school and loving it. She is in a much smaller class this year and Ms. Debbie has returned as an aide. Her class has emphasis on life skills and is set up like a house, complete with kitchen and laundry room. When I describe this class to most people their response is usually, "I wish my kid could take that class." Well, home economics is offered in high school, but then again it is harder to teach normal teenagers the basics of life than it is younger students with developmental delays.

Amanda is very proud that she earns a smiley face for her behavior for the day. She is making a point to show it to me. She prides herself on cooperation and has learned to stay much calmer when things go a rye.

Amanda's big accomplishment has come in the past two weeks. She now goes to sleep by herself. For many years she was terrified to fall asleep in her bed by herself. Either Tina or I would have to lay in bed with her until she was asleep. If we tried to leave before she would succumb to sleep she would follow us out of the room, call out, scream, cry, or worse. Those of you with a special needs child like Amanda know what I'm talking about when I say, "or worse."

But now, after I read her a story or tell her about my day, she simply says, "Bye, close the door." Within fifteen minutes she is asleep.

I think this came on do to a flight delay two weeks ago. My brother and I flew into DFW after a quick trip to LA. We were scheduled to get in at DFW around 8 pm, instead it was closer to 11 because of a late arrival at LAX and then a broken toilet. Amanda had decided to stay up until I got home. Had it been the original 11 pm arrival at home she would have made. But there was no way she was going to make it until 2 AM. She pitched a pretty serious fit, but Tina held her ground and told her she could just lay down on the movie sack until I got home. Tina said Amanda talked to herself for about half an hour about how mad she was and then fell asleep. About 1 AM Tina her call out, "Hey Tina! My back hurts, want my bed." Tina walked her to her room and said Amanda was asleep as soon as her hed hit the pillow. Ever since then she has been going to sleep by herself.

She told me, she thinks about stuff before she falls asleep now. This has become a serious victory in our house. School wears her out and she is asleep by 8:30, or at least kicking me out of her room, and now Tina and I have an extra hour and half together in the evening.

A change of title

I changed the name of my blog today. I have a bench in my front yard under a beautiful oak tree. Amanda and I sit on this bench almost daily and visit. It is where she and I have grown together and personally I believe if I were not her father I would not be me.

We painted the bench today, and my sister pointed out to me that I really do love that bench. It is a place where I think about everything that is important to me while Amanda sits and talks about everything that is important to her. So, I have decided to move things along. Thank you for your understanding.

I would not draw a line in this sand

Yesterday I was driving Amanda to meet with a mobility therapist for lunch at McDonald's. Now, if anyone has any experience with my girl they know Amanda ALWAYS has a cellphone with her. These phones never have a battery in them, but that doesn't keep them from being any less real in her world.

She was having a very important conversation in route to her meeting which went as follows:

"Yes, Yes, Yes, NO!!!!!, Yes, Ok, see you later." Then she hung up.

Amanda had her two hour session with the therapist and went home for the afternoon.

At 2:30 I received a call from Tina. Amanda's therapist still had her phone and was headed back to her house and hour away. We needed to go get that phone. The other dozen phones couldn't substitute, it had to be her latest phone. I was out the door in a flash.

Tina called the therapist who turned around and we met her about 20 minutes outside of town. She understands that this is not spoiling, but survival.

The therapist would have been back in town in just two days, but two days is a long time if you are dealing with a hostile enemy, even if they are small. Just ask the Mexican army at the Alamo. They lost about 4,000 troops in 48 hours.

This was new

Yesterday she did something that caught me off guard even though it is a normal everyday occurrence for most parents. We were leaving a small restaurant and she bolted out the door and was headed across the parking lot by herself. I caught her in three steps and grabbed her hand and told her to not do that again. Of course she asked, "why?" I gave the simple and direct answer, "So you you don't get smashed by a car." She squeezed my hand pretty tight when I said that.

In college I once pulled Tina out from in front of a moving car when she wasn't paying attention. Anyone can do it. I just didn't think Amanda would bolt like that.

You see, her mobility has always been less than average. She didn't crawl until she was 11 months old. She started cruising at about a year and a half at which point therapists and doctors said she would walk "any day now." More than a year later an orthopedist finally prescribed orthopedics and a reverse walker. She used the walker for more than six months before she walked independently. But even then she was very unsure of her footing. So for the most part when were out of the house I simply carried her.

I would scoop her in my left arm and just take her anywhere she needed to go. I'm a stout 210 pounds and it really wasn't much effort until she cracked 60 pounds. After that I would carry her only for stairs in public like at football games and such.

Her condition allows us to have handicap parking permits. Parking lots were a real challenge until then because of her lack of depth perception. She thinks every stripe is a tripping hazard so she tries to step over them. The closer we park the better, otherwise we will never make it across the parking lot. This is why you will often see her with me at Home Depot. I tell her she needs to come with me so I can park close, she laughs and yells, "SIGN!" I won't use the sign without her of course. Too many people need the spots. Although, one of the funniest quick scenes from the Simpsons is when Homer parks across four handicap spots and walks into a store dragging his leg.

As Amanda continues to progress I'm just going to have to be prepared for "normal" behavior. I'm just not trained for that.

On the links

I haven't played golf this year and I find that to be just tragic. So Saturday morning Amanda and I were up and ready to go. We cooked pancakes and got dressed in proper golf attire. Amanda in green Capri shorts and green striped shirt. I went for that dapper black slacks and light blue shirt with black piping and matching black hat. We looked the part. Then we warmed up on the Wii with Tiger Woods before heading out. I set Amanda's player on easy and as usual she cleaned my clock because I give her mulligans and putt for her. Straight up I think I can take her.

We drove out to the club and unloaded Amanda's small bag with a wood, a 6 iron and a putter. I gave her a sleeve of balls and she was ready. I had my clubs brought out of storage and put on a cart along side Amanda's. We then went to the clubhouse for lunch. Her order was grilled cheese and since it was Saturday I treated myself to some cheeseburger sliders. We ate our meal and visited about her up and coming softball season. Which mostly was her saying the name, "Dalton" over and over again.

Dalton is the teenage son of a coworker who Amanda always wishes good luck to before he plays baseball. According to his mother this last time Amanda did that he hit three homeruns in two games. He asked if he could help Amanda play on her softball team this year and now she is in love with with him. She tends to focus on individuals rather intensely and that is actually OK with Tina and I. It gives us a little control, not much, but at least a little.

It warmed up while we were having lunch and we headed to the driving range. Amanda took her jacket off and said, "Pretty day, don't need jacket." Her sentences are getting longer and I'm remembering every one. The range was empty as most of the players were on the course with the large Saturday group. I gave Amanda about 20 balls and she started shoving them forward. Occasionally she would hit one a little more pure and scream with delight.

Like I said, I hadn't played in four months. The first thing I had to do was wipe all the dust from my clubs. The skills came back rather quickly, but not the touch.

When Amanda plays golf with me she doesn't tee off. She hits from the area of my tee shot and on the first hole she advanced her ball almost 30 yards. I gave her a "Yeah Amanda." When we get to the green she places her ball a couple of inches in front of the hole and taps it in and yells, "BAWDIE!" She is very enthusiastic which is part of her charm. She has picked up a new trash talk too, "Not on your best day." I taught her that one.

We played nine holes. She got a little tired and stayed in the cart for about 3 of the holes. Afterward we went to the clubhouse and split a piece of chocolate cake. We both love chocolate cake. We agree that white cake might as well be broccoli. In hindsight we should have held off on the cake. On the drive home she had an accident that involved me dawning latex gloves. But, compared to what happened at Chick-Fillet three years ago, this was nothing. It was less than ten minutes to clean her up and we were back in business for the rest of the day.

As for the Chick-Fillet incident: NEVER sit at the first both next to the side entrance. I can't believe the building wasn't razed after watch happened there. It was the first time I ever left my body and went to my happy place to get through an event.

She slept hard Saturday night and a little later than usual on Sunday morning. It was a nice 24 hours. And really that is what a person wants when they are taking it one day at a time.

An ARD to remember

As I have previously posted, ARD meetings are not something Tina and I enjoy. However, the one we participated in Wednesday may change our mind on the subject.

We met with most of Amanda's education team. Some of the these therapists have been working with her for more than five years. Now while we have had road blocks in the past from the diagnostician, this time there was overwhelming support for Amanda on all fronts. More importantly, everyone was saying the same thing and reinforcing the consensus of Amanda's needs as well as achievements.

But the highlight of the ARD was when the dance instructor, who has never participated in our ARD before, told us the following. "I know you have heard this before but you have never heard it from me, I love Amanda. The kids in my class love Amanda. She tries very hard and all the students look out for her." My heart went to about 200 beats a minute and I came as close to crying in a room full of women as I ever have before. It just made me feel so warm inside.

Amanda will be moved to a less academically challenging class in the fall. It will have more of an emphasis on life skills, which is an area she can actually improve in and contribute to society as a whole. Not every child is destined for greatness, but that doesn't mean they can't be amazing in their own right. I'm proud of my girl.

Someone wants to know what I think

I am to be interviewed after work today by a an education major. She is required to interview the parent of a special needs parent for one of her classes. Tina has done this interview for several students the past few years and asked if I would do it this time to provide a fresh perspective.

My job as a father and husband in the area of Amanda's education is to be both the unstoppable force and immovable object. A difference of opinion with school administration is an area where Tina is an awesome corner man. She tells me what she wants done and I do it. After years of dealing with distributors and contractors I find administrators and teachers to be a PG version remake of The Texas Chainsaw Massacre. Tina shouldn't have to bare the weight of conflicts though. In my vows I promised to protect her, and really the greatest threat to her health and happiness is an unyielding administrator. So, that is what I gladly do.

I have dubbed an ARD meeting, "A Reason to Die." The room has Tina and I in it along with about eight adminstrators, teachers, and therapists. The meeting starts with the principal reading the rules that the meeting will be civil and not personal. Then it is turned over the to head of special education at the school who starts with, "Let's talk about your mentally retarded daughter." Yep, just love that woman.

Anyway, I digress. Back to the interview. Tina hasn't told me what the questions will be. She said she wants to see me handle it like she had to the first time. I feel fortunate that the young woman who is conducting the interview is actually one of Amanda's two frequent sitters. So I know she will not try to rile me up or break me down. She is a dear friend of both Amanda and Tina, and I think she thinks I'm ok too.
So for my three readers I know of, thats about it from TXK.

The Travelers Are Home

We just got back in town last night after five days in Willis, TX to see Tina's parents. Amanda finds the place to be fascinating. Normal people succumb to boredom in about 45 minutes. One of the only things Willis has going for it is cheap liquor, of which I took advantage of out of necessity. Since I stopped drinking beer at the beginning of this year I find liquor to be a good substitute.

On the upside, Amanda had a nice time just hanging out with her grandparents. They went to an open mike gospel night where her grandfather sang a solo and then in his group. Also, the MC of the night had the entire congregation sing Happy Birthday to Amanda. She loved it.

Another bonus to this trip over years past is Amanda now travels well. Up until about a year ago being in the car with her for more than 30 minutes would fall under the heading of cruel and unusual punishment. I remember once, about seven years ago, Amanda cried from my driveway to her grandparents driveway. That is a total of 270 miles. She did stop crying when we stopped to eat in Marshall. As soon as we were back in the car she fired it right back up. Amanda wasn't much for the concept of time. She wanted to be there right then and right now and she just didn't care who she was killing.

Another time we were coming back from Little Rock, AR after a trip to Arkansas Children's Hospital. We had a 1999 GMC Yukon and Amanda was screaming like a torture victim. I was steadily going faster until I had the big SUV going just over 90 mph. Normally Tina would say something, but she was wanting home as much as me. And then we were passed by a Suburban. Tina just popped off and said, "He must have twins." Still the funniest thing I have ever heard under those circumstances.

But this time, as the last time, Amanda traveled perfectly. She sat in the front seat with Tina on the drive down until we got to Nacogdoches where we ate lunch. Afterwards she got in the back with Tina while I drove the rest of the way. On the drive home she rode in the front with me until Lufkin and then stayed up front with Tina. An upside to driving a Lincoln MKZ is it is smooth enough to read in the backseat while going down US 59. I read a lot of Water For Elephants while Tina and Amanda talked about "girl stuff." Leg shaving is the new thing for Amanda.

Anyway, the drive is done, we are home and tonight is bowling night (see earlier posts).

She didn't need me but she thought she did

Right after I posted yesterday I left the office to make a delivery of a small fitting to a local customer. I was there about ten minutes when Tina gave me a call from the pediatrician's office and said that Amanda was going to need blood work. The little girl has had a very sour stomach for the past four days and we needed to get her checked out. She went with Tina and not both of us because she said she is growing up and she wouldn't need a shot.

I made the five mile drive quickly and walked into the clinic and saw my two lovely ladies about to the board the elevator. Amanda saw me and said, "They trick me." It was pretty cute the way she was more put out with the matter than scared.

She and I went back in the lab, I sat beside her and she was braver than she has ever been for blood work. You have to believe me when I say this child has had more than her share of blood work in her almost eleven years.

Afterward we went home for lunch and then I went onto the office for the rest of the day. He stomach is getting better but because she has had such a difficult winter with infections and antibiotics she has developed another problem. Let's just say I had to deal with a true Tasmanian Devil this morning. So it was back to the doctor for some meds for that particular problem and because it is cold and raining today I was requested to help. So we went through that. All part of being the dad, or at least this dad.

Acceptance of Optic Nerve Hypoplasia

There are five stages of grief. When a child is born it is suppose to be the enbodiment of dreams of a union, but when the child has multiple disabilities, similar to loosing a loved one, there is a grieving process for the child that never was was.

The five stages are:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

I've been through this journey with Amanda and the most important one to me is acceptance.

I remember perfectly when it happened. When I knew that this dear sweet little person was just the way she was and her journey was going to be different from what my wife and I had envisioned from the day we decided to have a child regardless of any effort.

We had been working in the yard, her and I, cutting sod from the backyard where some construction was going to take place and moving it to the front where there is a bare spot under an oak tree. It was a spring day and she was wearing a red windbreaker and pull up blue jeans. We had cut a few pieces from the back and I was making sod buster jokes with her. Watching westerns growing up gunfighters always hated sod busters. She had a shovel and was trying to help. She weighed about 50 pounds and and the shovel was pretty uncooperative to her efforts. She didn't say much back in those days so I told her when you are digging something you have to cuss it. That is when she surprised me and I heard a little voice just say, "shit." OK, so she knew more that I thought.

That is when I taught her to say, "dag nabbit." It came out like, "da nabbit" and we had a good time with that for months to come.

Now this was almost four years ago and we were working on toilet training so she wasn't wearing a pull up. We were now in the front yard and I was on my hands an knees and she was just watching me very intently when all of the sudden her little hand grabbed my should and she got a very serious look on her face and then pooped her pants.

Up to this point Amanda had a long track record of pooping her pants. It used to just get on my last nerve, but this day that nerve wasn't even hooked up. I just looked at her and said, "Well of course you did." Scooped her up and took her inside and cleaned her up and then went right back to work.

We sit out under that same tree on most warm days and visit. She pretends to be on one of my old Blackberries and I enjoy a cool beverage and let Tina stay inside and take care of whatever she needs to do.

I'll be writing about the other four stages in the near future, but I had to get this most important one out first.

An animated irony

I'll be 40 years old in May and I'm OK with that. Most of my friends are older than me, my wife is 41, age is just a number. In fact, in many ways I am still very child like. A big facet of this is that I love animation.

I'm not so much a Loony Toons or Tom & Jerry kind of fan, I did grow past that years ago. But people who really know me know that I would rather sit and watch Toy Story than Child's Play. In high school I watched GI Joe, much to my girlfriend's dismay. In college Tina and I were the only two people in the theater to see The Little Mermaid.

But the irony of my enjoyment for animated films is that my daughter has a condition called Optic Nerve Hypoplasia. This condition leaves her visually impaired and mentally delayed as well as extremely sensitive to sound. Needless to say, she doesn't like the busy world of animation, particularly "Finding Nemo." And one of the big things I was looking forward to when I found out I was going to be a father was watching Disney and Pixar movies with my child.

But, when life gives you lemons you should make some lemonade and break out some vodka too. Amanda does have some movies that she likes: Cheaper By The Dozen and it's sequel are top of the list, Yours, Mine and Ours, The Sandlot I, II, and III, Madeline, and finally a little animation with Mary Poppins.

And then there is the Peanuts. The Charlie Brown Cartoons do not attempt to be three dimensional and the conversations are slow enough that she can follow by herself. We have every one on DVD and I have loaded even more onto my I-pods.

And finally there is the fact that she only watches these movies when she is ready for bed. She seldom sees the end of a movie but the 22 minute Peanuts really help her unwind.

My only problem is I have a copy of Wall-E that I borrowed from my nephew more than three months ago and I just can't seem to find the time to myself to watch it.