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. :)

Not Forgotten

It is so easy to become consumed with all that is going on with Luke. There are just so many questions in my mind. I spend so much time thinking about everything. I have noticed that my other three children are engaging in some quite dramatic attention seeking behavior. It has kind of shook me back into reality. All of my children are equally important. They have all changed my life. They all deserve so much. I guess we are all learning how to act in a large family. I was an only child. My husband was one of two children. Our children are getting used to it also.

I am sure my children have noticed that I am really distracted. They are also hating the fact that I am working this summer. I guess I feel a bit guilty. I hope that all of my children know that I truly love them. I need to learn how to meet the needs of my children. Now, I realize that I am not capable of meeting all needs. I do need to clear my head and allow myself to truly enjoy what God has given me without worrying about the cares of my life.

Total Awesomeness!

Just a few minutes ago Luke did this! He pulled up to the table in order to get his bottle (major reinforcer!). He tried for about 5 minutes, then became frustrated and fell back on his bottom. He then did something great- he tried again. He actually walked on his knees to get back to the table to try again. This time Marty moved his bottle closer so he could get it.

He is a totally different child since being off his seizure meds. He interacts more and cuddles more and makes more noise. It is truly fantastic! To see my son act more like the boy I know him to be has brought me so much joy! Yes, he still has strange behaviors and he still does not communicate with words... but... he is communicating with actions now. He is looking at what he wants and moving towards it. He is noticing the world around him. He now notices the leaves in the trees and his siblings. He is truly an awesome little boy and I look forward to seeing him grow... Then, we will give God the glory! God has been good to us. God has been good to Luke. I guess I am just realizing that now. I have been so confused as to why Luke had to go through this. Now, I truly believe there is a higher purpose. There is a plan. There is NO coincidence.

Tests that Led to More Questions

So, One great thing came out of the three day testing that took place. We found out that Luke is not having seizures! How awesome is that?! It is a total answer to prayer. He no longer has to take meds. I noticed a couple things while he was not on meds during the testing- he smiles, laughs, makes some eye contact, and tries to communicate a bit. It is awesome! So, thank you Lord for an answer to prayer~

The one frustrating thing is that the testing really didn't provide any answers. We know what is not wrong... we just do not know what is wrong. It is frustrating. I really want answers~

We're Beginning to Talk About a Diagnosis

Luke had an appointment with his nuerologist yesterday. We still do not have results from the blood work, urine work, EEG, and MRI. It is frustrating. I so badly want answers now. I need to wrap my head around something, deal with it emotionally, and move on. I am almost feeling angry. One thing was said during the appointment that totally shocked me. The doctor said she would feel comfortable giving him a diagnosis of cerebral palsy. When I thought about someone with CP, my mind automatically took me to experiences with people in wheelchairs who do not use their arms, hands, legs, and feet. These same people also cannot communicate. Luke just doens't fit into that group of people. He uses his arms and hands and he at least moves his legs and feet. I really didn't respond to what the doctor said. I really didn't know a whole bunch about CP.

I called Marty after the appointment. He didn't want to talk about it. I then talked to my mother who told me that she had been thinking this all along, but also knows that doctors give the CP diagnosis when they don't know what is really going on. Mom is always so good at helping me find peace.

So, I went online and looked it up... and actually, I was quite surprised to find the diagnosis is pretty right on. I am looking forward to see if the MRI and EEG support the theory that Luke is CP. Here is some CP information I have found...

What is Cerebral Palsy?
The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy. A small number of children have cerebral palsy as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse.

Is there any treatment?
Cerebral palsy can’t be cured, but treatment will often improve a child's capabilities. Many children go on to enjoy near-normal adult lives if their disabilities are properly managed. In general, the earlier treatment begins the better chance children have of overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them. Treatment may include physical and occupational therapy, speech therapy, drugs to control seizures, relax muscle spasms, and alleviate pain; surgery to correct anatomical abnormalities or release tight muscles; braces and other orthotic devices; wheelchairs and rolling walkers; and communication aids such as computers with attached voice synthesizers.

What is the prognosis?
Cerebral palsy doesn’t always cause profound disabilities. While one child with severe cerebral palsy might be unable to walk and need extensive, lifelong care, another with mild cerebral palsy might be only slightly awkward and require no special assistance. Supportive treatments, medications, and surgery can help many individuals improve their motor skills and ability to communicate with the world.

What research is being done?
Researchers are investigating the roles of mishaps early in brain development, including genetic defects, which are sometimes responsible for the brain malformations and abnormalities that result in cerebral palsy. Scientists are also looking at traumatic events in newborn babies’ brains, such as bleeding, epileptic seizures, and breathing and circulation problems, which can cause the abnormal release of chemicals that trigger the kind of damage that causes cerebral palsy. To make sure children are getting the right kinds of therapies, studies are also being done that evaluate both experimental treatments and treatments already in use so that physicians and parents have valid information to help them choose the best therapy.