Updates and Cool Stuff

Luke is doing really well! He has started crawling on elbows and knees. He's pulling up on his knees. I am so glad that he doesn't take the seizure medicine anymore.

Logan is going into 2nd Grade. Sydney's going into 1st grade and Gracie's going into Kindergarten. I can't believe how fast all four of my children are growing. School starts in a couple weeks and it has gotten me thinking about what I want for Luke this next school year. I want him to receive therapies that are more tailored to his communication delays. He gets PT, OT, and Speech, but the speech therapies do not provide him with a way to communicate his needs. I want him to learn some signs. So, he could tell me if he wants milk or water, or if he wants food or if he wants a specific toy.

This is where the diagnosis comes in. He cannot receive those tailorized services without an autism related diagnosis. So, I met with his neurologist who says that all of his genetic tests have come back normal and it may takes years (and a lot of money and traveling) to figure out what syndrome Luke has. We don't have the money to travel the world trying to figure it out. He told us that it isn't life threatening, so we could wait. I then asked him why no one has talked to me about autism. He acted shocked. I read him my list of reasons I believe Luke has autism and he finally agreed. He would not diagnose, though.

This month he will have his well-child check-up and I am going to bring my list to his pediatrician. We are having to take baby steps, but at least we are moving forward!

Other exciting family news-
Sydney learned how to ride her bike without training wheels this past weekend. She also learned how to tie her shoes. I got a part time ESOL position in Escambia county and will be going back to school this fall. I will be pursuing my Master's Degree.

Missing Luke

After work Thursday, I left with my two girls and my mom and dad to go Tampa. The reason for the trip was to visit with family and go to my cousin's wedding. My husband, Luke, and Logan went to Georgia to visit his family. I enjoyed my trip to Tampa. I needed that time with my family. Marty enjoyed his trip because he needed time with his family. It has now been 5 days since I last saw Luke, and I am missing him terribly. The girls and I are back home and the boys should be coming in during the next few hours.

This is the longest time I have ever been away from Luke. I miss him. It has given me the opportunity to look at a lot of things by taking a step back. It has helped me gain strength.

The ESAC

I received a call from a lady with CARD (the Center for Autism and Related Disabilities) the other day. Luke's Early Steps (a local early intervention program) teacher had refered him to be evaluated by the lady. She is going to do the ESAC (the Early Screening for Autism and Communication Disorders) with him. She will come a couple of afternoons for a couple of hours. She will ask questions and go through the screening. I am really excited about this. I feel like we are moving in the right direction.

While Cerebral Palsy is a fitting diagnosis, I believe that Autism is what Luke really has. I have gotten so frustrated with his doctors. His pediatrician and his neurologist have children with autism, but they refuse to even talk with me about autism. His pediatrician had a hard time dealing with her son's autism diagnosis. To this day, she still thinks he has a syndrome, but really disagrees with the autism label. When I take Luke to see her, she dances around the autism subject. She will admit that he has "autistic behaviors", but will not diagnose him with autism. His neurologist will not even talk to me about it. So, if he has "autistic behaviors", wouldn't that be good enough for an autism diagnosis? Then, he would be able to received specialized services for the disability.

So, he turns two on August 21st this year. He has an appointment with his pediatrician and his neurologist. I am going to those appointments with guns blazing. We'll have the ESAC evaluation paperwork. I am also going to be sending in a video of Luke to both doctors. I am done dancing.

The following are the reasons I believe autism is the correct diagnosis-
1. He makes little to no eye contact.
2. He flaps
3. He self stems (ie; tapping toys against his teeth, tapping his teeth against hard surfaces)
4. He is developmentally delayed (which could mean other disabilities also)
5. He does not talk, yet he screams
6. He stems vocally (mmmm sounds)
7. He usually wants to be left alone (he does not seek out social interaction)
8. He likes fans and lights (really all things that are bright and spin)
9. He engages in repetitive play (pushes the same button hundreds of times, does the same thing over and over again, etc.)
10. He is hypotonic (low muscle tone)- This could be genetic. I am not Ms. Toned Muscle myself.

There are probably some other things, but come on! I mean, really! Autism should at least be on the table as a diagnosis.

Pure Happiness

I have gotten to spend most of the evening alone with Luke. It has been refreshing. Our afternoon together started off with a surprise-

I picked up Luke from Mimi and PapPaw. When I walked in the door, Luke was playing in his "gym". His "gym" is his room at Mimi and PapPaw's house. They have all his toys on the floor so he can play with them. I went into the livingroom, which is down the hall and across the kitchen from his gym. I talked to Mom and Dad for a while and then I thought I heard Luke's little voice in the hall. I got up to look... He was crawling towards me! He heard my voice and wanted me. When I picked him up he screamed and smiled. He got so excited.

So, I drove him home and fed him dinner. I have been on the floor with him for a while. I know not to force it with him. He doesn't like to be crowded. I just let him be, and he crawled up to me and snuggled my leg.

I celebrate every little victory. The little things are HUGE to me! Yeah Luke!!!!

The Little Boy Who is Teaching Me About My Son

I have been working closely with a little 3 year old boy who is autistic for the past week or so. Knowing him has changed my life. He is a tiny, brown hair little boy with pale skin. He talks a little bit. He can name some animals and he can say "No!". He came to me not knowing how to request something that he wants. He would take my hand and lead me to the object of his desire, but he could not request it verbally or with signs. I learned quite quickly that he liked to squeeze things, especially when he was frustrated. For example, if someone wouldn't give him what he wanted, he would pinch. If he was feeling frustrated with me, he would find the nearest piece of my skin and squeeze. I quickly found a squishy ball to replace my skin :)

This little boy loves pressure. He loves to press his face against me. He loves hugs. He loves to be squeezed when he hugs. I have noticed that Luke likes the same things. So, I went home and hugged Luke. I squeezed him tight and said, "Mommy loves Luke". His reaction was priceless. He smiled and laughed and squeezed me back. The little boy I am working with has taught me how to bond with my son.

I love each of the four boys that I am working with. They have such a hard road ahead of them, but the right teachers can make all the difference. I am hoping that I will have as big of an impact on them as they have had (and will continue to have) on me. They are helping me face the reality of having a son with a disability.

Sippy Cup Victory!

I have finally found a sippy cup that Luke will drink from!!!!! So, no more bottles! I was bound and determined to get him to the place that he would drink from a sippy cup by his 2nd birthday. Luke beat my deadline. I want people to view him as a two year old and not a baby baby. Marty says I shouldn't worry about what others think, but you know what, I do! I am sorry, but I do care what others think. I do not want to be viewed in the wrong light. I do not want my children to be viewed in the wrong light either. IT MATTERS!

Refreshed

I spent the day with my two girls today. We took our puppy to the vet and went to Target to spend tooth fairy money. I am finding that shopping is theraputic. The girls bought some items from the dollar section and I bought them summer camp appropriate shorts and shirts. They are going to Santa Rosa Christian this summer. They have strict dress code rules, so I had to buy the girls shorts from the boy section. I hope they'll forgive me :)

Gracie and Sydney love to brush my hair, "play lotion", and put make up on me. They are so cute. They will fight over which side of my head belongs to them. I really needed this time with them. Now I feel refreshed and ready to face any challenges that may come my way...

Here is what Sydney wrote to Jesus today- "I love Lord. He has blessed me. When I call Him he comes to me". She accepted Christ on July 16th, 2008. She knows her Lord. Gracie is getting there too. She is beginning to understand Christ's love for us. :)