Autism Part 5

We have recently been asked by our insurance company if Nicholas is considered disabled. I was not sure how to respond to that question. I mean, I know what his diagnosis is and I know it is something he'll face forever, not something he will grow out of. But disabled? I choked back the tears that evidently are evidence of my changing hormones since they now come so frequently and easily. It seems I am entering a new season in life, if you will. But I choked on the lump in my throat and proceeded to tell the unsuspecting lady all the wonderful things Nicholas CAN do. Her purpose of the call had nothing to do with weather or not our son could build "amazing" Lego creations or that he can line up his cars and trains to an exact right angle or that even though he cannot communicate in sentences or sing his ABC's, that he CAN tell you what letter magnet you are pointing to on the fridge AND most of the time, it looks like he is not even LOOKING! "I believe he's like psychic or something," I told the lady.

"Well, isn't that nice. But is he disabled?" She wanted to know. I told her I wasn't sure. Aren't all three and a half years olds, "disabled?" I asked. I mean, none of the three and a half year olds I know, know how to fully take care of themselves. Most of them still poop in their pants on occasion and miss their mouths when eating spaghetti. "Really, all three years olds are still pretty retarded if you ask me," I said.

There's that R word. In some respects, Nicholas, my beautiful little boy, is considered retarded. Slow to learn, developmentally delayed, behind his peers, however you want to say it. But I am retarded at certain things too. I can't really grasp physics or spell worth a crap without spell- check. But I have other gifts, and so does Nicholas. I try to just focus on the things he CAN do. He is pretty amazing and I do believe he is psychic.

I have no problem sharing with my friends and family about the journey we are walking through the maze of autism, but to say my son is "disabled," I cannot do. I can read his reports from speech therapists that he is over a year behind and explain to people at the park why Nicholas is so weird. Why he flaps his arms and spins around a lot. And when he sees other children his age, why he goes nuts laughing his head off in their faces and touches them to the point of being annoying.

But to outwardly admit that he is "disabled" sucks the hope right out of my soul. And I cannot do that. It is hope that gets me through the day. It is hope that opens my eyes to my son's future, one where he will not just be "functioning" but thriving. It is why we drop him off with my mother (who is a true angel on earth) on Sunday nights and he stays with her until Tuesday evenings so he can go to Challenged Child and Friends. It is why we have immersed ourselves into learning sign language. It is why we will take him to a barn to ride horses for Hippo Therapy. It is why we have his daily care down to a science to avoid too many freak outs and blunderous temper tantrums. If we didn't have hope, we wouldn't bother with any of this. I guess we'd just settle for a "disabled" kid and not let talk of early intervention and setting up appointments with experts dominate our conversations.

So, after a rather long conversation with our insurance lady, I finally said, "Nicholas is ABLED. He has challenges, like we all do. I don't know what the future will be like because in reality, as he grows older, he becomes less and less like his peers his own age. As he gets older, it seems he gets quirkier. But I still am full of hope, so don't take that away by sticking him with some lable. Nicholas is Nicholas. He is not Autism or Pervasive Developmental Delay. Once you've met one autistic, child, you have met one autistic child. They are all different. Nicholas is special. I hope that answers your question. Have a nice day."

Back to School and Football

The summer vacation went by way too quickly and the children began school 3 weeks ago. Mollie had her first day of kindergarten! We asked her if she wanted daddy or me to take her and she said, "I want to ride the bus!" We asked if she was sure and she replied in a very sophisticated attitude, "I have waited my WHOLE life to ride the bus. I am riding the bus."

Fischer promised to sit with her and escort her to her class room when they arrived at school. I was choking back the ugly kind of tears when Mollie got up those huge steps onto The Big Cheese! Her little Minnie Mouse book bag almost made her fall right out backwards off the first step, so I had to push her back into the bus. As soon as it drove away down the winding dirt road, I cried all day in jags thinking about how proud I am of my sweet children.

Jolie began her sophomore year at White County High School. She is so happy to finally be at the real high school. (Freshman go to the Ninth Grade Academy.) She is already in two plays. One is for the One Act Competition and I think it is called Strata. I am sure it is obscure. I loved Bat Boy last year. She is also in Clue The Musical. As in the board game! It is a mystery theatre production meaning the audience will determine the outcomes each performance! Love that! Jolie is playing the quick witted detective. Her lines are hilarious and the music is awesome. I can't wait til it comes out. Jolie's love life has blossomed and she is back together with her dear friend, Ben. I love Ben. He is so smart and cool.

Sydney is in drama too and has the same teacher as Jolie. Sydney began 7th grade at the White County Middle School. I must say, I am so pleased with the staff and principal at the Middle School who actually seem to understand what a learning disability is. I believe this will be Sydney's best year. Already, she is excited and determined to be successful and work hard. She is overwhelmed at times, but she has hope for the first time in a LONG time. Sydney has been writing poetry in her reading class. It is so beautiful and insightful. I hope she will let me share it on my blog sometime. Sydney is still dating her long time boyfriend, Dustin. He is the most wonderful boyfriend. He just "gets" Sydney and they are so cute together. I think he's more like her best friend.

Fischer started 3rd grade and being a young man of few words says, "It's fine." when I ask him how school is. He has his nose constantly in a book and even walks while reading. Even at family night supper at church on Wednesday, he kept reading while he went through the line to get his food. The problem is, he has to now keep a reading log and write a summary of what he's reading. He isn't too keen on that and forgets to really keep up with it. Oh, well. The big news for Fischer is that he is on the Tiny Mites White County Warrior Football Team! Now, I have to admit I wasn't very encouraging of his desire to play this sport. I always thought the chess team was a better fit. But guess what. He LOVES it! He works so hard at all the practices. Wearing the helmet itself is a work out. It is tough. And Fischer cannot run or catch a ball to save his life. However, he doesn't give up. In fact his coaches gave him the nick name of Sponge Bob 'cause he gets knocked down and then pops right back up. He never quits. Fischer is quite awkward at running and I am pleased to say NONE of the little boys make fun of him! In fact, I hear them cheering him on when they do their drills and leave him in the dust. He has a great team and really wonderful coaches. And, we did learn Fischer has a hidden talent! Who knew he could play a defensive line man because he can dive for the legs and his skinny little self can sneak right in there and take down the rival! He takes him down to China Town! Recently, in a scrimmage, Fischer took down the running back and ended up at the bottom of a dog pile. All you could see were his skinny little legs hanging out under all these boys. The coaches ran over to get everyone off and pulled Fischer out. They said, "Are you OK? Are you OK?" And Fischer said, "That was awesome! I've always wanted to do that!" Football has been good for Fischer. He really is running faster than he ever could before. He and Adrian have enjoyed practicing in the yard, throwing the ball around. When asked about football, my son of few words spoke so eloquently. He said, "Well, the players on my team are each like an atom. together, we make something bigger." WOW! Then he went on to explain the nano particles of an atom and how stands inside quirks are vibrating and that is like God. (...and, whooosh, it was over my head.)

Sorry I wrote so much about Fischer, but being the definite middle child in the family, he typically gets left out. So, he's the highlight this time! Go Fischer!

Mollie is a diva. She celebrated her 5th birthday at the park on the 13th. If you look at the picture of the picnic table, you will see her in the dark pink shirt with her friends. Fischer is in the orange, Grayson is in the white shirt by Mollie, then Lilly and Lilly's mom in the blue shirt, and then Alana. On the other side (not pictured) is her friend from Resurrection Episcopal Preschool, Sebastian. She had fun at her party and felt like a princess.

Nicholas started school at Challenged Child and Friends last week. He gets speech and occupational therapy while he's there. I love this school. I began volunteering there when I was 13 way back when the program was just beginning and they operated in the First Baptist Church. Then I worked there in the old building and Jolie and Sydney both went there. Jolie was one of their first "And Friends." Now Nicholas is going and I am really excited about it. It's a state of the art school in a new state of the art facility. There really is a special feeling you get when you are there.

Well, that's about all for now! T.T.F.N.

A Clock, a Coffee Pot and a Field of Lilies

Here are the places you can buy your books:

In Gainesville:
The Little Lady Bug
Northeast Georgia Medical Center (The Window Shop)

In Cornelia:
The Book Store (in the shopping center across from Dance A Lott)

In Cleveland:
Yonah Mountain Treasures (next to Yonah Burger)

Far Away:
E mail your request for an order form to: asklulabelle@windstream.net
I was sending books with the order form so people would get theirs more quickly, but I regret I can no longer do that. I will send your book when I receive payment.

Books are $15.00 (plus $3.00 if it is shipped to you)

Proceeds go to the J. Michael Hosford Foundation. The foundation supports people in need in the North Georgia area through United Way Organizations that my father was involved in. It is a way to honor him and continue his life's work of helping others.

"In order to keep it, you must give it away."

Birthday Girls and Football practice

Sydney turned 13 on the 13th. She had a very small pool party with her best friend/ boyfriend, Dustin and the Huyke's, Kerry and Allen. We made our own pizzas and had a good time watching Sydney make her famous pickle pizza. Everyone agrees that it is not as bad as it sounds. On the way to Su Su's house (where the pool is) we stopped at Dairy Queen and got a Cookie Dough Blizzard ice cream cake. Yummy. As the party was wrapping up, Adrian surprised Sydney with a diamond and ruby ring and told her he wanted to be the first man to give her a ring. She cried. So sweet! He did that for Jolie when she turned 13 too.

Jolie turned 15 on the 24th. She has been grounded until school starts. (just a little something about a camping trip and not calling home to tell us where she was and spending the night out with her friends, no parents...no big deal!) She has been very humbled by her consequence, but was sad she would be grounded on her birthday. I took the kids to the Mall of Georgia and Fischer, Jolie and Sydney got to finally see Harry Potter while Nicholas and Mollie played in the spray fountain. We did a little shopping and came home. Everyone thought we were going out to dinner so we waited in the van while Jolie had to run inside and put her shopping bags in her room. (I told her to do that.) She opened the door and some of her friends were there! Surprise! She nearly had a heart attack! The video at the bottom was taken after the surprise. We had some good eats, thanks to Adrian who put it all together while we were gone. Then the teenagers went to the back yard for a bonfire. Adrian pulled extension cords for Christmas lights and music. He even cut out heart luminaries to light the path. It was so pretty. It was fun and Jolie was so glad to see her friends! (sorry some pictures are fuzzy.)

Fischer has been playing football. Isn't the view of Mount Yonah so pretty from the field where they practice? It is hard work and we are very proud of Fischer for never giving up or complaining. The helmets are heavy and he gets super sweaty. It is a very different world for him. He's used to reading, fishing, drawing, and playing chess. He loves it.

Autism Part 4

Nicholas is 41 months old, almost 3 1/2 years old. He was recently diagnosed with PDD-NOS which means Pervasive Developmental Delay Not Otherwise Specified. PDD is autism. One person told me Nicholas is not autistic but we asked our developmental pediatrician and he said, Nicholas IS autistic. Some people say, "Oh, he's fine, he looks at me in the eyes." And others ask, "What interventions are you doing? You better sign him up for these hundreds of therapies or he will not make progress." People on the outside assume that if you have a diagnosis of autism that magically, state agencies like a public school, will take you under their wing and lead you by the hand and show you what to do. On the outside, people assume that autistic children will automatically receive special services. What they don't realize is that even though there are federally funded and state funded services for Nicholas, each one comes with a brick wall. Can you hear this mother bear growling yet?

Our family began taking sign language classes with a private tutor named Jordan. (Here's a picture of Nicholas signing his name with Jordan.) Sounds fancy, but actually, the teacher is a student himself and used to be one of my students at Good Shepherd Lutheran. We are all picking up on it quite easily and quickly because Jordan has a special teaching gift. He's wonderful. The language pathologist at the autism clinic where Nicholas goes every few months told me that sign language would be good for Nicholas. It is multi sensory, meaning it stimulates Nicholas' communication skills visually and tactically. Nicholas' speech is delayed by over a year. He can say several words but does not engage in dialogue or speak in sentences yet but is beginning to put two words together.

Nicholas is a cool little fellow. He is obsessive about certain things, but I can appreciate his fascination with them. One of his new passions is car washes. On a typical morning, the first thing out of Nicholas' mouth is, "Car wash? Car Wash? Car Wash? Car Wash? Car Wash, peeeease." For a special treat, we drove the van through the automatic car wash last night and you would have thought we'd taken Nicholas to Disney World. He was so excited!

Another passion is dominoes. Nicholas loves to build things and he is fascinated by making dominoes mazes and knocking them down. This is a new thing for him. He can focus for HOURS on this new thing. He climbs on the pool table and gets his Kapla blocks and goes to town. Nicholas is the size of a 18 month old, but you should see him climb onto the table. My sister calls him Lieutenant Dan (the guy with no legs in Forest Gump) for his amazing upper body strength. I think I should send Nicholas to train with a trapeze artist. Actually, some times I think we should all join the circus.

Life is good.

A Clock, a Coffee Pot, and a Field of Lilies

More books are coming! Everyone is sold out. 500 are due to arrive on Thursday! The Window Shop at the hospital will get some and The Little Lady Bug on Thompson Bridge Rd. will too. I will have some and you can e mail your request to: asklulabelle@windstream.net and I will mail a signed book to you.

Also, there will be another book reading with music on August 5 at 7:00 at Cleveland United Methodist Church. You can purchase your book then and I will be there to sign them.

Books are $15.00 and proceeds go to the J. Michael Hosford Foundation.

Happy Fourth of July

Check out Mollie's flips on the left hand side of the video! She is a water baby. We celebrated Independence Day at Adrian's sister, Melissa's house with her husband, Steve, 4 of their 5 wonderful children, 3 sons in law and 3 (plus one on the way soon) grandchildren! We love spending time with this remarkable family. They are so full of fun and love. We can only aspire to raise our 5 children as successfully and as phenomenally as they have!