Autism-Is there HELP???

If you have or know a child with autism, I'm sure you can relate to this picture. Sometimes I feel like my head is gonna come off. Autism is a strange disease. It is not picky of race, social status, nor religion. It is said that more boys than girls have it though. Autism DOES NOT mean you are a BAD parent!!! For many years it was said that children would rather go inside themselves than relate to a parent who didnt care. This is absolutely untrue.

John 9:1-3
And as He passed by, He saw a man blind from birth. And His disciples asked Him, saying Rabbi, who sinned, theis man or his parents, that he should be born blind? Jesus answered, It was neither that this man sinned, nor his parents; but it was in order that the works of God might be displayed in him.


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#Forgotten_kids: the children that have nearly invisible disabilities.. They have their arms and legs, can see and hear, run, play, etc., but most have never been to a Birthday party or a sleepover.. they are last to be chosen to play, and first to be blamed. Their illnesses aren't fatal, but a small part of their hearts and souls die with every rejection. Their behaviors may seem odd or unpredictable to themselves as much as society. They are overlooked, thus the name "Forgotten_Kids". http://forgottenkids.virtualave.net/

I HOPE TO UPDATE MY JOURNAL SOON: THE REST OF THE PAGE IS FROM LAST YEAR 98
COBY IS NOW 9 YEARS OLD. HE IS ON NO MEDICATIONS AT THIS TIME. HE DOES TAKE A PRODUCT CALLED TEEN ACTIVE WHICH HELPS WITH HIS ATTENTION, BEHAVIOR AND WITH BEDWETTING. WE WILL BE GOING IN DECEMBER FOR HIS NACD EVALUATION. IN JAN HE IS SCHEDULED FOR A NEW DIAGNOSIS EVALUATION. WE ARE FINE WITH THIS AS WE DONT CARE FOR THE PDD DX THAT HE CURRENTLY CARRIES. WE FEEL HE PROBABLY FITS MORE IN THE ASPERGERS CATAGORY.
MORE TO FOLLOW SOON.



This is my beautiful son, Coby. He is 8 years old. He was diagnosed with PDD-NOS in June of 1997. He was almost 7 years old. It was Feb. 1998 before we became aware that the PDD dx was on the autistic spectrum. The Dr. who diagnosed him told us PDD was *somewhere between ADHD and autism*. We had no idea. It seems the Medical field either gives you no hope or they dont give you the whole story. I know there are many Dr.s out there who are straight foward, honest, and willing to help. We have not found many. I've learned that I must KEEP ON ASKING until SOMEONE listens. We knew that Coby was not developing on a typical schedule at a very early age. He had less than a 10 word vocabulary at the age of 3. We were told *he would outgrow it*. By more than one Dr. including a very well know neurophycholigist in OKC. After a while, as JUST PARENTS, you begin to feel that they MUST be right. They do have a degree after ALL. What do WE know??? I now encourage any parent with a question about their child to PUSH AHEAD until someone will listen. It is imperitive to the child. So many professionals out there work a 9-5 job and dont want to exert themselves beyond that. We've experienced this in the medical as well as the educational fields.

I know Ive learned from having a high needs child not to judge ANY situation. I used to look at people in stores or restraunts and wonder why they didnt disipline their kids or even before I had kids why they didnt comb their hair or wipe their noses. Now I realize most of them probably DID--a hundred times. Im sending this to hopefully reach someone who needs to understand what its like and maybe to reach someone who deals with it daily and didnt know there was anyone else.

MY JOURNAL

A little background here first. As Ive stated our dx only came last year, and then it was 8 months before we knew that it was a spectrum dx. THEN, is when we began to deal with his NEEDS. Over that 8 months we had tried him on numerous different anti-depressant meds which were supposed to help with his behavior. He was put on Buspar, Paxil, Adderall, Luvox, clonidine, along with the Tegretol he takes for seizures and Claritin for allergies. We also tried the DDVAP for bedwetting. None of the above did anything for more than 2 months. We also tried some vitamin therapies too, including Pedi-Active spray and chewables, Brain Pep, Super Nu-Thera, and Teen Active. As of May we were exclusively using Tegretol, Clariton, Super Nu-Thera and Teen Active along with Vit. C, Calcium, and acidopholus. Oct 98 we took him off of everything except Tegretol to prepare his body for SECRETIN treatment. We want to know exactly WHAT is working on him. After the first 3 weeks I had decided that even if secretin didnt work there was no need to put him back on all those pills because there wasnt significant enough change to bother with it. Well...as the next 2 weeks moved by, we began to notice many behavior that we hadnt seen in quite some time. He has begun to *anger* tantrum again. This is screaming, hitting walls, throwing things across his room, ripping covers off his bed, etc. He sits at the table for well over an hour *eating*. He changes video games every few minutes. His frustration levels are VERY high again. His compliance is virtually non-existant and he has no emotional control. These are areas he had made great strides in. But on the other hand, I too want to note that he is continueing to progress in many areas. He is up to reading Green Eggs and Ham entirely by himself as well as several other books--that just being his favorite. He is also still having many *good* times. I call these *times* because they ARE only moments usually we never have completely good *days*. Life here is a moment by moment process of moods. He has *learned* alot since we have brought him home exclusively. Of course you must remember that everything Coby does is governed by his MOOD. One thing we have found that if his room is a mess then he DOES NOT function. He cant stand it being a mess yet cant figure out where to start in cleaning it. This is an area that *I* have to work on by making sure he is KEEPING it clean so he doesnt get stressed. So far he has done this an entire week. He has a list of morning things to do and evening. This really helps all the kids stay on track. Ive included things like brushing teeth, combing hair, getting dressed. Now another Ive had to add since taking him off the Teen Active is changing sheets daily, because he is wet every morning now. His compliance is better now I believe from the *training* we have done. He may not like it but he also KNOWS that it is what he HAS to do. Ok, with this aside, I'll begin with Dec. 1. This day was when I felt it was time to start the journaling for others awareness of what autism is and what life in like in the household with autism. After spending he past year leaning ABOUT autism and HOW to deal with it, we are now beginning the tide of not allowing autism to RUN our lives but to fuction IN our lives.

A DAY WITH COBY 12-1-98

Well it has been a really long time since I had a kicking screaming fit but today I did!! Im in the midst of it now, so Im sitting here typing instead of wringing Coby's neck. Lets see it started out with the fact that he needed to be dressed by 10 am to take Rylee to ballet. Didnt do it, didnt do it, didnt do it (get the picture) was carrying clothes out the door as we were leaving with no more time left. (He is now screaming at me that the poop in his pants is bad, bad, bad----I just CANT deal with it!!!!!) Lets see he screamed at Taryn for not playing with him at ballet and then layed on his back and spun in circles making bodily funtion noises with his mouth. Constant LOUD noises the whole hour we were there. Then we went to Walmart--just to make a return. Well then he took off as we were waiting in line and I had no idea where he was. He had gone to wash his hands in the bathroom. ARGH So he had begged to get in the cart when we came in the store, so I put him in it. BIG HUGE mistake!!!!! He began screaming and kicking and yelling at the VERY TOP of his lungs how he hated me and I was stupid!!!! Nope, I couldnt find a large rock to crawl under and I didnt have enough cards(I have business cards printed explaining autism and Coby's behaviour because some people will flat out tell you that you are a bad mom) to pass out to all the people staring at us, so I smiled gave him a dirty look and ignored him. He finally sat in the cart. Then we got up to the counter and he stood again--now remember he is 8 years old-not big but bigger than most kids in the back of a grocery cart. He grabs the counter and whips the basket into the counter repeatedly. So as Im trying to get him to sit again and Rylee who is in the front of the basket is screaming at him to stop--we start the next fit of I Hate You!! and ARRRRGGHHHH!!!!!!--his grunting noise when upset. Well, as leaving the store we see a good friend and I let him get out of the cart to see her. So we are all leaving Walmart and he decides hes gonna run and jump on the back of the cart. We were going downhill and I run him over with the cart. There is no sympathizing with Coby when he does something like this. He just screamed at me again. Im tired and frustrated at this point but not angry just sad. We come home eat lunch and the next 2 hours go rather simply. Then its back to ballet for Taryn this time. Well they have this Little Tikes Slide Jungle Gym thing and he was under it, with Rylee fixing to slide down and Taryn climbing UP the slide. He does that blood curdling scream thing and then Rylee jumps and screams and kicks Taryn in the nose. Big huge red marks and will probably have black eyes tomorrow. He sits next to me and I can *smell* him. Well I send him to the potty, and think he has gone. But instead he slips out of the bathroom and goes in the BIG ballet room where the PROPS are for the Nutcracker performance THIS weekend. He tore up the 7 ft gift wrapped presents and by this time I know he is missing. Cant find him anywhere and no he hasnt gone out the door--only one. A little boy found him and by this time he has SHI* his pants!!!!!!!!!!!! *I*-ME *I* screamed ALL the way home. I just dont get it. WHY? WHY? WHY? I know the tears will come but right now Im really mad!! And of course I feel really BAD that Im Mad. I wish I was better at this-but Im just not. I HATE it!!! Jerry is gone for 4 more days and I will just explode if I dont get it out.
After I wrote this and went to clean him up, he had *cleaned himself* up. Not very good either and put on clean clothes that we then had to remove and try again.
Dec. 2: Its already started today. This is what its like when he's not on any meds or vitamins. I had really forgotten HOW bad it was before. I did this for 7 years before we found out he was autistic, not for lack of asking but for lack of Dr.s not wanting to give a *BAD* diagnosis. I hope that my *life* might be able to help someone else. This morning I when I apologized to him to for being so upset and yelling at him, and explained that mommy was upset when she couldnt find him, he told me he was IN the 7ft boxes. OOOOOboy.

Dec. 10: Well, Im of course behind. Journalling is very hard for me to do. On Tues, he woke up in a SUPER mood. He had completely read Green Eggs and Ham the night before and was very proud of himself; which is also a NEW emerging trait for Coby. Praise has never worked for him in the past. That would actually insure that he would never do that particular action again. So, we would have to be very careful. But on Tues morning he wanted to take that book everywhere so he could read it to anyone who would listen. He did very well at Rylee's ballet that morning but I had given him a Cold tablet for his runny nose, so he was a little groggy. At Taryn's ballet on the other hand there were at least a dozen kids *running* around the studio. Well, Coby cant resist that temptation so he got right in the middle and became very loud. The studio manager (a man) came out and reprimanded all the children. Coby was already wound up though and couldnt come down quite that quick. I thought I would go talk to him and maybe slow him and quiet him down a bit, my mistake. He began to flail and scream at me. When he does this, I will hold him till he can get control of himself. So as he is screaming at me and kicking my shins repeatedly, the manager comes out again and begins to tell him how he told him he couldnt scream etc, etc. Anyhow, needless to say Coby is not welcome to go back to the studio again. Yet another embarrasment for Taryn. Now I need to find a babysitter twice on Tues. so I can give that time to my girls. Ugh Coby went to Awanas on Wens night and did have to be removed from the room one time for non compliance. He also came home with poopy pants. Today, he was first one up, fully dressed of course because he wet the bed again. He picked up his room, stripped his bed and carried out the trashes with little complaint so he could get on the computer. Even when I looked outside and saw that he had missed the trash can, he went out and put it all in with only a small grunt. He didnt eat lunch, does that alot these days too. Always wants *something else* his words. He is bawling and screaming right now because he wants to sleep on his top bunk and I told him he cant because of the bedwetting. He says he wont wet the bed, but of course he will--he has NO control over it. I did pick up an interesting piece of info. today. There is a test for fatty acids that seems to be an issue with auties. Anyhow, the DMAE that is in Teen Active is a fatty acid. Hmmm sounds interesting. Cant wait to get some info. from the lady who does the fatty acid test and from Dr. Scott. We are waiting on a behavioral test (pre-secretin) and he has said our infusion date should be by the end of next week.

Dec. 11--You know its funny. Several people have said wow. Yes yall got the really bad days but they really arent all like that and we are very grateful that he talks and walks and communicates. Lots of autistic kids dont. Yes, it isnt easy but it could be sooooo much harder. Not to mention that the odds of us having had another autistic kid were at 60% so we rejoice in the health of our daughters. Although I do catch myself analizing everything my youngest does or doesnt do. Coby has had a fairly uneventful day today. So it was one of the easy ones. Dad was home for about an hour this morning and has come back this evening for the night. The kids are really excited to see him. Coby has been working on Interactive Reading Journey and doing real well. This is actually his *choice* this week.

December 16, 98: Well, all is in motion. Coby went in for a few of his pre-secretin tests today. We are set to infuse on Fri at 1:30 Mountain Standard Time. I would like to request prayer for him, our FABULOUS Doc Scott, and the nursing staff that will be assisting him. This has been an intense road of research and time for both me and Doc Scott. The last few days have been very tramatic for Coby. Just rough. He had a seizure in the car yesterday that was really bad and lasted quite some time. He wouldnt go to bed last night and even after I turned out his light and went to bed myself, he got back up, shut his door, turned the light on and I have no idea how long he was up. He just sits in there in reads books and looks at magazines and plays with his Legos. This morning he was so sweet though. He was standing under the mistletoe *tempting* me to kiss him, so we had a ball while I was chasing him through the house with big ole kisses on my lips. It was great fun. He had me tickle him while they took blood today. Took 2 sticks this time. Seems his wrists are better than his arms. My family tends to have rolling veins, unfortunetely he got those too. He really was on one at the Drs office today and thank goodness that everytime he told Doc Scott that he hated him, Scott told him back that was ok, he still loved him. And of course there was the kicking, screaming, tearing the paper off the examine table into itty bitty pieces to prove his point. But would you believe I got a urine sample from him. I wont give details but suffice it to say it was NOT easy. Thanks for all the support over the last few months. Please continue to pray for the money to be supplied to fund this experimental treatment. We are looking at much more than just the secretin at this point. There is one important test we need to do but it costs over $300 and has to be paid for upfront. And our secretin turned out to be more than we anticipated too. So far, God is carrying us through, we will continue to trust in Him. We pray that this will be a new chance for Coby.

December 17, 1998--This has been a really bad day for Coby. Everything has upset him. Even the air he breathes. *L* Had a little bit of poopy pants tonight but not much.

December 18, 1998--Infusion Day! I kept us busy the entire morning and all went pretty well. We did 2 grocery stores, a bookstore and a outlet store with no major incidences. Stopped by a friends house, and got home in time to put the Emla cream (for numbing). Now THAT was fun! That is not a job for just one person and a fighting child. I had to put it in 4 different areas so as to be sure that a vein could be found in an numbed place. My friends oldest daughter came to watch the girls and Coby and I were off. I had prepared him pretty well this time about what was going to happen. We got to the Drs office and he was fine. As we walked into the exam room and Doc Scott closed the door, he began to pray for the success of the treatment and for Coby. It was totally awesome. I just cant imagine any more in a Dr, than of course finding one like him for all of us. =) Coby played with everything in the exam room. But Doc Scott was doing a super job in being *nice* to Coby. The nurse he chose to help us was great too. They used an armboard to keep his arm straight, he didnt care for that too much but the fight was only minimal. He wanted to sit up but eventually we got him to relax and lie back. I tickled his tummy again while it was happening and finally got him to quit watching what was going on. It did take 2 sticks but the second one was successful. I wish I had the money to hire them to be personal physicians for us. Hmmm wonder if they do housework. *L* We stayed at the office for 30 minutes after to watch for any reactions. Had none. Didnt take Tegretol any Thurs or Fri. Dr. asked us to keep him off till Sun if no seizures. Since there is no real protocol on this, its hard to know what to do about it. Coby had to have Christmas ice cream so that left out the .49 McDonalds and went to Baskin Robbins. I found myself watching him looking for some miraculous thing to happen. *L* He did go to bed quite easy last night but I was getting on to his sister for playing in the bathroom and getting all wet instead of being in bed like she was supposed to, so I guess he got the point.

December 19,1998-- He called me several times in the night scared and finally turned on his light about 4. He was wet and had horrendous poop this morning. When I told him to get it cleaned up the fit began, screaming and hmphing at me. I went and helped him, and then he seemed fine. Got in the tub, bathed himself, and actually got out when I told him to. So far mood is fine. We slept late but everyone in the house was up for numerous reasons all night long. I woke up in Rylee's bed this morning and really dont know when I got in with her. Who knows? Will update more as anything exciting occurs.Day 2--December 19, 1998 Im curious about others with high fuctioning kids who have tried the secretin. I would love to hear from you. BTW, Coby is 8.4 yo. Im not sure if its wishful thinking or that Coby just had a good day. He spent NO time in his room at all yesterday, which is where he has been for the last few weeks. He came into the school room, propped his feet on his desk and started reading another Dr. Suess book. He stayed with the family all evening and put himself to bed about 10pm. Also, our toilet is clogged with undies and while I was trying to get my oldest to get the snake from the utility room, Coby was already in there looking. I had to go to the shed to look for it and by the time I got back in the house he was putting his shoes and socks to help me look. This is not totally abnormal for him but has been since we took him off all his vitamins. Its like the behaviour we saw while we had him on the Teen Active. I guess I know the biggest changes we are hoping from range from potty training, night training, clarity in speech, socialization, control of emotions and temper, and focus on task. He's been somewhat hyper but he always is so dont really think that is a side effect. He has been on the VERY silly side too.He's been very social today. We finished our Christmas cookies and he was there the entire time. He was VERY LOUD today. No voice control at all. This is an old issue that we havent noticed being as bad lately. He followed instructions much better today, and put himself to bed on his own at 9pm. This is very unusual. No poop at all since secretin on Fri. Hmmm.

December 25, 1998--Day 7--I cant say that I have seen anything positive so far. Coby gave a very animated speech about a dirty glass he found in the cabinet last night. Jerry and I were laughing hysterically. We've seen many new facial expressions that are so funny. He finally had a bowel movement Mon. night in the potty, but has pooped his pants twice since then. First one was grainy and somewhat loose, second was formed *as dh says like playdough*. He has eaten very little over the past 3 days. Yesterday he only ate some candy and one piece of pizza. Today he picked the top off cinnamon rolls and ate chips and lots of cashews. Maybe its just the holiday junk, but it really seems as if his apetite has decreased greatly. His sleep has been much improved, but not sure if that is secretin or being off the Tegretol and then back on. He has been putting himself to bed at night and taking naps most days, which he hasnt done much at all in the last year. We went to my Dad's on Wens. and he had several meltdowns as well as inappropriate behaviors. He scraped the refried beans off the serving spoon back into the serving bowl, my to my Dad's horrification. *L* He went to give me one of those very common *love HITS* and hit the chair instead of me. I tried to comfort him but he wanted nothing to do with it. He just went into the LR and went to sleep. He is thinking correction is just a big laugh. Jerry had to chase him all around the house and down the street when we were visiting some friends on Thurs. We have used spanking in the past effectively most of the time but that isnt impacting him at all at this point. I would like to say his speech is clearer but that may just be wishful thinking on my part. Christmas Eve was very busy. We had planned on staying home since Jerry was only here for 1 1/2 days, but decided to deliver Christmas presents first then come home and relax. Well, we spent much more time visiting than planned and didnt get home till after 6pm. We ate, finished wrapping presents, and decided to go ahead and open presents. Coby did super, and was thrilled with all his gifts. He handled it all well, and seemed to have no problem all day waiting his turn to open gifts. He did however, wake up in a terrible mood this morning and wanted nothing to do with his stocking and only wanted to play his new Sega game. And has been that way virtually all day. His attention span is terrible as far as staying focused on anything. He was staying on task ie.computer games, video games, Legos for hours at a time. He is changing from as little as 5 to as much as 30 minutes now. He is sitting at the table for long amounts of time without actually eating, just crumbling and destroying his food. We've never allowed toys at the table but he is now thinking that he needs his toys right there with him. I dont know... Im not ready to call it a failure at this early point, but can definetly say Im not pleased with the irritable side effects. Oh... another thing Ive noticed that Ive never seen before is he will sit with his tongue hanging out of his mouth alot. That concerns me. Im not sure if Ive mentioned but his voice volume has been VERY high too. Thats really all I can think of currently. At least we made it through the holidays without any major incidents.

Jan 2, 1999--Many of yall have been asking about Coby and since it changes from day to day at this point, I thought I would wait till I had a little more to say. Unfortunately, nothing good so far.  As you know, we took him off all his vitamin supplements 7 weeks before we started the secretin treatment.  The first 3 weeks showed little to no change in any behaviors or functioning. As a matter of fact he began reading books during this time.  Yes, complete Dr. Suess books.  Never read but just individual words then all of a sudden he was reading books.  He has not lost this ability; yet will not read any others except the ones he already started reading, which could be related or just typical child/success thing.  Anyhow the next four weeks he began to loose all his composure in all areas of behavior, focusing, and his speech began to become more garbled.  He has a Large vocabulary but has a lot of trouble with articulation. Secretin treatment occured on Dec. 19.  with little fighting from him. We noticed over the next few days an increased hyperactivity, extreme silliness, absolute defiance, no follow through on anything, lots of argueing, screaming, kicking, hitting.etc.  He made it through opening gifts on Christmas Eve without a hitch.  He did fabulous and enjoyed all his new stuff imenesly.  But from there till yesterday he has literally been bouncing off the walls.  As long as he can do EXACTLY what he wants to when he wants to he has no problems.  He has hardly been interacting at all with us except on one evening he came into the school room and did *school* work. ???? who knows???? If he is told to do anything at all he will begin screaming and yelling and whining--major fits.  It has really been bad.  Jerry is home and that is helping me alot just giving me a break.  Coby has actually gotten some autistic behaviors that he never had in the past and also has picked back up on some of his obssesive compulsive behaviors too. One day he was upset and knocked all his stuff off his dresser.  He has *tied* up everything in his room with his speaker wires.  Tieing up things and playing with kleenex endlessly are 2 of his major obsessions.  Ive had to remove almost all his stuff out of his room just so he wont hurt himself or anyone else.  Hes also been zoning out, and will have his tongue hanging out of his mouth alot.  Last night though he did make a joke on me.  He said his seatbelt wouldnt work and when I got in the back he laughed and laughed because there was nothing wrong with it.  Guess that is a good thing. *L* Now, before anyone *thinks* this is a failure let me explain a few things. Some parents are seeing immediate results, others from abuot day 10 and still others are seeing more results from week 3-5.  We are PRAYING for this to happen.  So far it has been extrememly disappointing.  We had high hopes, but had also tried to keep them in check knowing that this might not work. But it still feels like such a let down having to work so hard now. We also know we have to give it some more time too.  Its just tough doing it all. Poor guy this is hard on him.  The most amazing thing is he is asking for his brown pills back. Those are the ones that were helping him called the Teen Active.  They gave him focus and control over his actions and emotions. Anyhow, not really good news yet not really bad news. If it doesnt work we will go back to the vitamin therapy and just work, work, work. Thanks for all the prayers and encouragement you guys have given me over the past few months.  It helps me get through many days knowing yall are praying for us and thinking of our children.

January 13, 1999--The meltdowns are slowing down some the past 3 days, and compliance is back up a smigion. Coby had a really bad weekend while we were out of town looking for a home. He got car sick, which he has never done, and threw up most of the way. He has been very lovey but that is not completely uncommon for him. I would say he is almost back to where he was on the vitamins except for his compliance. He is very hard to motivate and very seldom being obedient which we were accomplishing most of the time before. Just not sure how Im feeling about it at this point. While we were in TX, this was an experience we had. We were going to use the kids book it coupons to get their pizzas.  Well that wasnt what Coby wanted he wanted a salad.  We were on a very tight budget and really NEEDED to use these coupons, so we went ahead and ordered him a pizza.  He had a major meltdown and I actually USED *the autism* excuse to ask for a small bowl of salad for him of which the waitress was very cordial and just told me to let him go to the salad bar.  He was then happy.  Anyhow, to show how people *understand* autism, when she brought out the pins she gave them to the girls and told me that she got an extra one for Coby (with a wink).  So what my 3yo is more capable of reading than my 8yo autistic son? They just dont get it.  Oh well.  Just thought Id share.

MY BUSINESS CARDS

One side reads For More Information call 1-800-3-AUTISM
The other side says
MY CHILD HAS AUTISM
You are observing a developmentally disabled child. Coby has severe language and behavior disorders. At times he becomes confused, upset, disoriented, or violent. We, as parents are trying to teach him to function in society. Anything you may see us do is for the benefit of Coby and safety for all. Please do not stare as this gives him unwanted attention for inappropriate behavior.
Please excuse his actions!!

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