Timmy's Autism spectrum disorders Page
INTRODUCTION
Welcome to our page. I would like to share with you our journey with our son Timmy. I can't really say he fits anywhere, but I do know he is different. We have 3 boys, and Timmy is our middle son. Since he was born we have noticed things about Timmy that where not quite right. He is now 10 years old, and has gone through different diagnoses in the past. When he was 2 years old he was diagnosed with a complex speech disorder, and we where told by the person whom evaluated him not to expect much. We asked if he was autistic and they told us he was not, because he made eye contact, but that he did have some autistic tendencies. Timmy had many autistic features, like head banging, and rolling things in front of his eyes for long periods of time. He loved to swing in his swing, but hated it if we touched him. He was a good baby, and slept most of the time, taking hours long naps. He seemed to be a loner, and did not like attention . I wish I knew then what I know now, I would have done some things differently. Timmy has had strange behaviors as he has grown. Things like self abusiveness, severe temper tantrums, living in his own little world, repetitive behaviors, obsessive behaviors, terrible mood swings, hallucinations, personalities in his hands, and other stuff have made Timmy a unique little man. As Timmy gets older, he seems to be outgrowing a lot of his PDD behaviors, but his mood swings, and outbursts get worse. I would like to break our experience with Timmy into sections, so that you can better understand where we are coming from, and maybe you may be able to benefit from some of our journeys a little easier or you may be able to help us with your experience also..



DIAGNOSIS
Here is a list of Timmy's diagnosis and difficulties. Some things don't have actual diagnosis because when a child has a PDD Dx, it just is assumed under that diagnosis

Age 2 : Complex speech disorder: Timmy at the age of 2 had the speech of a 9 month old. He could only say mama, dadda, and NO. He underwent lots of speech therapy services, and I wish those people whom told us not to expect much could look at him know... He is very verbal. He still gets speech services 2 x a week, but it's for pragmatics and word retrieval. These are higher order Language skills he has difficulties with , and not his speech per say. As he points out to me all the time, " I do not get speech anymore mommy, don't call it speech, I get language"

Age 4: Adjustment disorder: ( yea, right :) )Timmy got this diagnosis because of his self abusive behaviors when he was younger. He had personalities in his hands, and he called them by name. There where bad hands, good hands, sad hands happy hands, work hands, dead hands, and I am sure a few more I can't remember. He had very obsessive types of behaviors, like he carried his tricycle everywhere with him, including to bed, and in the car, and this went on for months, and one fall day, he buried it under some leaves, and said it was dead, and never went back for it again. Timmy was never " naughty" in fact, he prided himself on being well behaved. But the bad hands would hurt him, and they would throw him down the stairs, and hit the walls and they wouldn't stop hurting him. Then Timmy started hearing voices. He heard a voice tell him to cut his chin off with a knife, and to stab mommy with a knife, he didn't want to listen, so he came to me crying, cause he didn't want to hurt me. We got Timmy into counseling, where again we were told he was not autistic, but that Timmy had a unique way of using his feelings. That he would punish himself using his hands, if he thought he did something wrong. The therapist taught him that he should not punish himself, that he needed to leave that to mommy and daddy. We couldn't understand this because Timmy was almost never punished, he always did his best to behave. After the therapist got Timmy to use his feeling the right way, and not through his hands, Timmy turned into a very violent little boy. His hands still come out sometimes, but I don't allow them, because I know what they stand for.

Age 6: Aspergers Syndrome: When Timmy was 5 we started having problems with hallucinations. One night He came down stairs asking what the red man was doing in his room. My husband sent him back upstairs. Moments later he came running down terrified of the pink man. He screamed and screamed. It was after him. I held him in my arms as he saw this thing peaking around the corner, and putting his leg through the vent from upstairs. It was a terrible night, one of the scariest we have ever seen with any of our children. In the morning, we decided we needed answers to what was going on. Real answers. We called his pediatrician, whom offered us no help at all. We called looking for a Christian psychiatrist, as we felt this was very important. And when her staff got our phone call, they where laughing at our situation. I know this happened because through the grace of God, something wonderful happened. An other Dr. was walking by the nurses desk, and heard them chattering, and making fun of our situation. He stopped, got our number, and called us. He had us on the right track for a Dr. quickly. When our regular pediatrician found out, she called me, and told me to drop it... we refused, and she finally gave us the referral to have him properly evaluated. Shortly after, Timmy was diagnosed with Aspergers disorder. We where so relieved. And I was very upset with his pediatrician. When I called her to tell her, the only thing she could say was " oh, well, here is a web site address with info that might help" we decided it was time to switch Drs. and use the Dr. that helped us. When I tried to do this, I found that he had been fired. I feel very badly, because I feel responsible for him. His name was Dr. Lero, and I wish I could say thank you to him for helping us that day. I hope he knows how much he helped us out. And if we where the cause for his firing, its really nice to know that there are Drs. out there, whom are more interested in helping someone really in need, than worrying about keeping there jobs safe. He was a good Dr. Finally we had the answers for whom Timmy was, and that he was not alone. There are many other children just like Timmy out there in the world...

Age 7: PDDNOS:After bringing Timmy's diagnosis up to the public school to get him services, we had some problems. The special ed. dept. did not feel comfortable with Timmy's diagnosis of Aspergers, and went all the way to tell Timmy's private school teacher that she felt that Timmy didn't have this Dx. His teacher tried to make him conform, which cause Timmy to have a breakdown (mental fatigue). When it came to my attention, I told them if they didn't feel his diagnosis was right, then they could have him evaluated themselves... so they took me up on it, and they got themselves in a bit deeper. There Autism professionals that work in the school system, evaluated Timmy. They felt that because he had a speech delay, he could not hold the Dx of Aspergers. There where some other things as well, Timmy hallucinations don't fit the bill either. Something about autistic children not hallucinating. So they gave Timmy the Dx of PDDNOS. Shortly after, we had Timmy seen by the best child neurologist around, Dr. Margaret Bowman. She is very good and knows her stuff very well. She also found that Timmy had major problems with sensory integration. She asked for a neuropsych evaluation to be done on Timmy. The neurophych evaluation also said that Timmy had PDDNOS, and not Aspergers, because of the speech delay, and the neurologist also backed up the Dx of PDDNOS.

NEW!! AGE 9: Emotionanal/Behavioral disfunction associated with :
1)ODD (Oppositional Defiance disorder): Timmy is considered to be clinically significantly oppositionally defiant... but only sometimes. Sometimes, he is great, when he is thinking clearly, but when he is not thinking clearly, and he is getting out of sorts, and his behaviors are getting worse, we have the worst time with this. This is a little boy whom loves Jesus with all his heart, so I know its just not a bratty thing. Its when his mind is not stable and he cannot deal with things the way he should.. however, he is still not allowed to talk to me the way he does, no matter what the cause, he needs to learn how to deal with it, without becoming like this.
2:Intermittent Explosive Disorder this part and the ODD dx are very new dx's. Timmy was seen by a new Dr, he was a developmental pediatrician. He told us that Timmy was definitely Bipolar, and PDD, and that he fit the diagnostic criteria for both. He also told me that because Timmy was being treated as though he had Bipolar disorder, there was no real need at this time to pursue the Dx of bipolar. What he did do, was give alternative diagnosis's, one was the ODD, the other was this... he said, that Drs. sometimes do this when they feel a child is too young for a Dx of Bipolar
OTHER STUFF: Disgraphia, low muscle tone ( hypotonia), Cerebral disfunction associated with : Developemental language-based delays, historically, and articulation , Developemental motor coordination motor difficulties, especially in sensory motor integration areas, hyperflexia, Large muscle skill coordination inefficiencies,binocular disfuction.



UNDIAGNOSED ISSUES
Sensory integration dysfunction: Timmy likes to crash into things, and had difficulties with sucking on things. He is very brave, and enjoys jumping off things, that could really get him hurt. He is sensitive to noise, and to small amounts of heat, and cold. At the request of the neurologist, we had Timmy evaluated for sensory integration dysfunction. Timmy does have this, and he is doing very well in this area. He has been getting SIOT since we had his evaluation done. But, even though Timmy has these problems, and does technically have SID, he does not need the Dx because its part of the autism thing. In SIOT the therapist works with Timmy on his sensory needs. Also she is doing a program called " How does your engine run?" It teachers Timmy to identify his feeling, and if he is feeling high, or low, or just right.. .and teachers him things he can do to fix it. Timmy has major, and I mean major behavior problem, and doesn't seem to be able to modulate his feelings. Sometimes he can be jumping off of things, flying though the air, and extremely ADHD, and the next moment he can be laying on the ground, and unable to motivate him into anything. He has many ups and downs throughout the day. He is on medication to help him with his behaviors, and it is helping a lot. I see it evening things off a lot, and he doesn't go through these mood swings throughout the day anymore, at least not like he was. He is a lot more stable on his med. I will talk about that later.

Anxiety: Timmy's Dr. feels that Timmy's hallucinations are due to severe anxiety. He does get frustrated very easily, and he gets worked up over weird things, and he is very fearful over stuff. With every evaluation Timmy has had, severe anxiety has been noted. One thing I do notice with Timmy is his zoning out. I guess this could fit under anxiety, but I'm not sure. Timmy takes breaks from this world, like he stairs off into nothingness, for short periods of time. The Dr. isn't concerned with this, its just the way his body coped with sensory overload.

Social Phobia: Timmy is afraid of other children. He gets social skills training now at the public school, even though he is being homeschooled. He is afraid of meeting new children, but knows what to say, and how to greet them, and ask them to play. Recent testing put Timmy in the 7% ile when playing with other children

ADHD: of course, what little boy with Aspergerish behaviors would be complete without ADHD. He doesn't need the Dx though. Its all part of the problem. He finds it nearly impossible to sit through school work. Some times he gets some work done, but mostly he gets almost no work done. He is repeating the second grade, or should I say, finishing it from last year. He is a very bright young boy, but if we could just get his hands in gear, and get his thoughts down on paper... think of the possibilities :)... he gets great joy in pestering other people too. He is extremely impulsive... we tried to medicate him for this, in hopes that we can get some schoolwork done... we tried ritalin. When he got to 15 mg a day, Timmy had more hallucinations. So we really cant medicate him for ADHD, its not worth more hallucinations to us.

OCD (Obsessive compulsive behaviors): also does not need a Dx for this. However, as he gets older, he barely has any problems in this area. I see him having very appropriate play with kids his own age now. He used to have times when he would obsess over certain things, and stick to them for periods of time, long or short. Now I don't see much at all. He is obsessive about colors. If a paper asks for a red crayon, he needs to find the crayon that says red... if it says red orange, or any other version of red, he gets all upset... if it does not say anything, he will refuse to use the crayon. He does get obsessive over things like star wars... but hey, he is 9, and every other 9 year old is obsessive about star wars too :)... but for the past, the stories I could tell of these behaviors would have you laughing for a week. One time, when my husband went away on a business trip, Timmy picked up coding... he coded everything to me, and I couldn't figure it out, so he kept doing it... a whole week went by, and I couldn't get anything out of him. Then daddy got home, and started deciphering his messages..... As soon as he had been figured out, it passed, and it was all over.. .and I think he liked having daddy back home again too.





OTHER DIAGNOSIS

Timmy also has moderate asthma, and is allergic to the environment in general. He gets allergy shots for the pollens, and we had to give his cat away, because she was causing his asthma attacks.



TIMMY NOW
Timmy is doing really well right now. He had to come off his medication because of a problem with low muscle tone. That is another area we are concerned about. He has always had low muscle tone, and it was never considered anything to be worried about. But when the public school did his recent reevaluation, they found some problems. He could (can) pull his arms in back of his head, dislocating his arms from their sockets without any pain. His muscle tone decreased significantly over a short amount of time. Last June, there wasn't much of a problem, but come Sept. there was much concern. In the testing, his fine motor compasite test fell in the 1 %ile. They told me it was caused by his low muscle tone, and that the problem was neurolocial and couldn't be fixed. I didnt believe it couldn't be fixed, and I became very upset over the whole thing. I did some research as to what the problem might be, and the things that kept coming up bothered me. I spoke to his Dr. whom is sending Timmy to an neurologist to find answers. Timmy now has accomadations in school that he can do all his work on the computer, because of his low muslce tone. I am also now homeschooling Timmy, so I can make sure he uses the computer, as his private school had problems accomadating him. I spoke to Timmys psychiatrist, and found out that Depakote can cause low muslce tone, so he had to come off his Depakote. We where afraid to do this, considering how well his medication had been working. So far, we have not had major problems with Timmy's behaviors returing. I think that Timmy is learning how to deal with his anger and putting it into place when he gets those feelings inside to hurt someone, or attack someone. Behaviorally, I dont think I could ask for things to be better. Other than, I wonder sometimes. He has to put so muck energy at times into controlling himself. If he was on another med, maybe he wouldn't have to try as hard as he is. It almost doesn't seem fair. But again, he HAS to learn how to deal with his feelings if he is going to be part of society. Timmy's neorologist appt is not untill May, so we have plenty of time to watch and see if Timmy's muscle tone returns to normal. As of today, it is still week, but better. He can still fold his arms behind his head without pain. I will update again in May, when we have more information to his low muscle tone.
FAMILY HISTORY

MOM ( ME) learning disabilities. Did not learn to read until the 10th grade, when a teacher finally took the time out to work with me. I feel that my main problem was my eyes. My vision is very poor, and I did not have a proper prescription lenses until the tenth grade, when I was able to buy my own pair.
DAD Complete computer geek :). Very smart, and a very good and kind dad and husband.
GRANDMOTHER ( dad's mom) : Paranoid schiz.
GRANDFATHER (my father): Bipolar. I did not know this until a few months ago. I recently did a search for my father that I have not known, or seen since I was very young.
UNCLE ( my little brother) Dx Bipolar .

HERE IS A LIST OF TIMMY'S HALLUCINATIONS SO FAR

3 yr. old
Heard voices tell him to stab mommy, and to cut his chin off with a knife.

6 years old
hallucinations of a “pink guy” in his bedroom, and chasing him down the stairs. As he sat on my lap, and I held him, he continued seeing it, as it peeked around the corner, and sticking its leg though the vent in the ceiling.

the next night, Timmy saw a black man holding onto his leg all night, and it did not let him cry for help. Timmy has claimed to see these men more than one time. I don't know if that true, or if he is making up stories.

no age remembered ....
.....He saw a black man holding on to a rope outside his bedroom window.
.....A set of teeth chased him down the stairs, and he crawled into bed with me, and watched feathers multiplying on the wall.
.....He heard a voice tell him to stop.. when he was in a tantrum.... he thinks it was Jesus that had talked to him, so he stopped.

4/99
Timmy saw a hand come from out of under the bed, trying to grab him. This may have just been a weird shadow, but with his history, I don’t know.

11/16/99
Adverse reaction to ritalin. Caused hallucinations of a “ gray man” that went across his bedroom door, into his bedroom, and into his closet and disappeared. On the couch, not far from me, that evening/ morning... he woke up and saw a pink man outside the living room window. The gray man was wearing a plane white T-shirt. with no markings on it.

1/2000
Timmy has told me that he does not always tell me when he sees things like the pink man. He has told me, that when Howie was angry with Josh, and he was upset about it, and let Josh sleep with him, he saw a blue man crawling around on the ground. This happened a couple weeks ago. Josh was in bed with him when it happened.

6/2000
saw curious George jumping all over his room. Timmy laughed, but insisted that even though he knew it wasn't real, he did see him, and he hadn't been thinking about him or reading about him.



Come see Timmy's Gymnastics page!!!!

pictures of me

Aunty Frieda, me, Howie and Joshua	Aunty Thelma and me
Gramma and me, I am Gramma's favorite	Troy and me He's my buddy
You are my sunshine My only sunshine	You want me to turn out the lights and do what?
I didn't do it, honest, Im telling the truth, he did it!!	Military school isn't going to help trust me !! (me and Joshua)
The Chinese military can't do it either I'm breaking out, you with me Josh?	We did it!! Does anyone have a few phone books, I cant see a thing
Rescued by Canada, This is my mom with us	Me and Aunty Dawn, she loves me the most :)

Please come and visit our family pages

howie's really cool web page Timmy's web page Joshua's web page The Wilkins Family web site Our Christian Page

If you have any comments, questions or would just like to say hi, please E-mail us at twilkens@ziplink.net