Javan's Story

Javan was born April 25, 2002, weighing 8lb 11oz. He was a beautiful newborn but did have a couple of minor problems. They could not get him to stop crying for about half an hour and were unable to get him to suckle. He eventually calmed down, but feeding proved to be a problem from the beginning. At about four weeks old he was switched totally to a bottle and things improved.
By two months of age, Javan had been diagnosed with Asthma. He was on a nebulizer regularly and he hated it! He would scream throughout the entire 20 minute ordeal.
By 3 1/2 months of age, Javan had moved in with us, his grandparents, permanently. Javan was a good baby, but he was not a snuggly or cuddly baby.
He loved to watch Baby Einstein movies and would stare at them for the entire half hour that they ran. He was also a drummer. Anything and everything became his drum. He could keep beat to any of the music that he heard. Most baby milestones were on a fairly normal timeline. He babbled, cooed, and said mama, papa, and other names and had a vocabulary of around 25 words at 18 months of age. However, by age two he no longer had names for us and had a vocabulary of only five or six words. He no longer said much of anything at all. We first had his hearing tested...it was fine. Then he had speech testing...he was now 13 months behind at age 2. He started speech therapy with Early Childhood Intervention (ECI) and had another battery of tests. It was determined that he had sensory issues, fine and gross motor issues, fine being much more delayed than gross, speech issues, oppositional/defiant issues, social issues and obsessive behaviours.He received multiple therapies. He had play therapy, speech therapy, occupational therapy, psychological therapy, and family therapy. We also enrolled him in a pre-school from 9-2 two days a week.

Since both of us sign, we used sign language along with speech when communicating with Javan. This did improve the communication a little.

We did brushing, weighted blankets, swaddling, and other sensory therapies. We also did mouth exercises, Javan could not pucker or use a straw at age 2 and still has a problem with it at age 5. His sensory input just does not let him know he has hold of a straw and that he can suck on it. He still bites it to hold on to it. He also still prefers a sippy cup, and he eventually bites the spout off.

When he was approximately a year and a half old, he was drumming on the walls and ended up at a window which he broke cutting his hand in two places. He did not even slow down. He only cried when I tried to cover it and take him to the doctor. This past year he decided to smell of a cheese sandwhich grilling and burned the entire top and bridge of his nose before anyone could stop him. Same reaction, nothing.

On his third birthday he was transitioned into the public school system Preschool Program for Children with Disabilities (PPCD) and attended school for three hours a day in a special education class. Language and behavior were huge issues. He did not handle transitions between centers well, but he loved riding the bus to school and going to school. Javan moved at only one speed...FAST. He paid no attention to space or objects causing him to be very clumsy. He loved to be upside down, loved to spin and twirl, and fell and ran into things all the time. He also loved to be inside/under anythihg. He virtually never cried or complained when he would get hurt and didn't want to be comforteded. The majority of this has not changed.

When Javan had serious asthma attacks, he would be put on steroids! Take a hyperactive child and add steroids to the mix and you have a nightmare! He couldn't sleep and couldn't be still and all of his 'problems' would multiply and be many times worse. He would scream, yell, become aggressive and emotional. His feelings, which were easy to hurt to start with, would crumble at nothing and he would just meltdown. He no longer hates the nebulizer, but will ask for it when he has trouble breathing. He finally realized it helped him to breathe. To this day he calls it 'Space Monkey' and will ask for it by name when his Asthma is making him miserable.
During all of this the school district had their psychologist observe him. The report was that they didn't see any prevasive developmental problems, it was just a behavior problem and immaturity! We had already set up to have a full psychalogial evaluation done on him at a children's hospital. So we waited on that. In the meantime, Javan's behaviors continued to deteriate.

When we got in to see the specialist, after about 3 hours of testing and observation we were told that he definately fit into the Autism Spectrum. At that time it was labled as PDD-NOS (Prevasive Developmental Disorder Not Otherwise Specified), and he was scheduled for full testing in a few months. He was started on a mood stabilizer, Seraquel, and checked every two weeks for adjustments to this medication. He was started on a very low dose and changes were made in very small increments. After about three months we all felt that we had reached a good level on the meds. Javan was sleeping through the night for the first time in his life. What a blessing that was.
At this point he was started on a medication for his hyperactivity. This also was started at a rock bottom dose and monitored very carefully.

Now that his behavior was under control, it was obvious that his problems were not just behavior oriented. He was finally toilet trained at 4 1/2 years of age. He still could not dress himself. That didn't happen until after his fifth birthday. He still has problems with it.

He had his full testing done in December, 2006, at age 4. It was two days of testing for about 3 to 4 hours each day. The results came back with definite Asperger's Syndrome, extreme ADHD combined, and Sensory Integration Dysfunction. There was a list of 43 accomdations that the school needed to make to meet his needs! We had a very long IEP meeting with those!

Javan flourished after the accomdations were implemented. He began to have actual language! Two and three words at a time. Just recently, he is using full sentences!

Javan has always had a stimming motion of his own. He streatches his mouth in to a big oval, opens his eyes wide, stretches his arms down to his sides and quickly opens and closes his fingers while wiggling them very fast and usually against his legs, and if he happens to be barefoot, you will see that his feet and toes are doing the exact same motions, if he is sitting in a chair the only difference is he puts his hands on top of his legs. If he is sitting in the floor, he rocks back on his spine so that his feet are raised off the floor and both hands and feet are stimming in the air. He has done this all of his life. I do not know if it is an autism stim or a sensory stim or a combination, but it is very much a part of him. He does it hundreds of times a day. Sometimes as often as 10-15 times a minute.

Javan craves friends. He will tell me so and so is my best friend, when in reality so and so doesn't want anything to do with him. He does not know how to play. Because of his sensory issues, he tends to play rough without realizing he could be hurting someone. Because of his autism, he doesn't read the situations and has no idea of the proper social interactions. With Asperger's he wants everything to be in order...his order...and can't handle it if others don't comply with his order.

Adults and teens fall in love with him, children around his own age want nothing to do with him and tend to make fun of him. He does realise when they are making fun of him and will tell me 'Gwanma, they are laughing at me' and then just collapse and cry unconsolably for half an hour to several hours. With Asperger's, kids know they are different, they just don't know how to do anything about it.

Javan loves animals, and he is looking forward to having a service dog. He ask me daily if today is the day his dog will come home. He desperately needs someone besides his grandparents and family who will love him unconditionally and be there whenever he needs to talk, or snuggle, or just hug. We are hoping we can complete our fundraising soon and bring Javan his forever friend home quickly.