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My Family....


fall 2008

Our Story

Nicholas was my first child born. He was only five lbs one ounces at birth and had breathing troubles that later turned into chronic asthma.I ended up raising nicholas at a very young age alone. I left a very volitale and abusive relationship with his father. My hope was taking him from that situation would make our lives better. I had no idea at the time what I was in store for as nicholas battles would be come harder and harder as life went on. Nicholas always struggled to meet up to his peers. He was a happy baby though always silly and fun. But at age three something changed. He became almost unresponsive to redirection. I constantly struggled to keep him on track or to even get his attention. He was defiant and never followed directions. School was always a struggle and I always blamed the daycare for what was going on and sat in a pit of denial. At only three years old he was kicked out of daycare because of his behavior. I knew that day something was seriously wrong. I began my struggle to understand what was going on with him and how to fix it. I started with simple reward systems, diet changes, herbal supplements and intense counseling it masked the problem but nothing seemed to work.Things seemed okay for a while but they really began to change. He started to get aggressive and easily flustrated. He constantly talked back and could not handle social situations or changes. I made the gut wrenching decision to begin ritalin medication of concerta. It was a drastic mistake he had a very rare reaction to the drug. Within minutes of being in sunlight he had third degree burns across his his forhead and nose and checks the skin started peeling away from his face within minutes. He began acting sparatic and uncontrollable emotions emerged suddenly I received a panic call from his preschool.Once I got him home it took myself and my grandmother along with my mother to restrain him. He was screaming hysterical and crying I had never seen this behavior before. His eyes were glassy and his heart was racing out of control. I rushed him to the emergency room to seek medical assistance. They told me he had a reaction almost like being on speed the doctors could only watch the meds take their course and prepared me for a very long night. Their was nothing they could medically do. It was the most frightful night of my life. I held him as he screamed and cried uncontrollably and restrained him when his behavior became untamed. I cried for hours watching him I felt so helpless and afraid I was going too loose him it was four thirty am before I was able to get him to sleep. That morning nicholas awoke around ten completely lathargec and his breathing was slow. I called the family doctor but she was no help. I knew to never try these drugs again and it was years before I allowed doctors to try a then new drug out strattera which was a miracle drug. Finally he was controlled through this medicine but it took a lot more to get us there. But even that lasted a short time.After our frightful bout with ridilun I kept pushing the counselors to search deeper but no one would listen but I never let up. One of the aides at his school quit because she was so stressed out by him and his behavior. He was jumping off tables throwing toys and his behavior was borderline psychotic. I removed him from the program for a few weeks but nothing helped he returned and I began utilizing the school system.When nicholas entered kindergarten I was blessed with the knowledge and wisdom of a what most would call seasoned teacher. She immediately recognized the signs of his problems and became the voice that would begin a process I as in no way prepared for but desperately needed. After months of fighting I finally got the school to do testing at kindergaten level for beahavioral problems and he was diagnosed ADHD. I knew this diagnosis was not accurate but with it he began to receieve resources through the school district that are still implemented today.Since this diagnosis I have switched one family doctor and two counselors to the one we have now who is by far amazing but other diagnosis have been added include Bipolar and PDD (pervasive develeopmental disorder). Both of these conditions are serious conditions the PDD is on the autistic spectrum (don't even get me started on that) but not considered true autism and the school to this day is non compliant with any diagnoses of ASD. Since I have not went through FORMAL testing for this condition he is still labeled specific learning disabled (sld) they may add cognitive later on but the emotional disabled is what I am fighting to have proven. His las IEP testing was done shortly after our home caught on fire last year. We lost everything including the home and all contents as you can imagine this was devastating for him. The rules state to emotional disabled testing can be done within 6 months of a traumatic incident. We are now at six months so the push for that testing has begun.Nicholas has been diagnosed symptomatic of autism particularly Asperger Syndrome and has been labeled high fuctioning autistic by both his family doctor and his psychiatrist. In fact everyone on the planet sees the autisim in him EXCEPT the school so to shut them up I will fix that. He can make eye contact and his behavior has been modified at times. He still cannot control his emotions and social settings are still a complex situation for him. Processing is difficult for him he cannot move from one thing to the next quickly there has to be a complete break form one event for him to move on or he gets lost in the clouds.For instance if he is writing with a pen and you ask to use his pen he cannot hand you the pen and move away to another task. Instead he will sit there requesting it back frequently and make subtle remarks to the fact he was using that pen for this or that reason. He will get disgruntel and if time enough passes he will merly try to take the pen back himself as oppose to it being given back. He simply cannot break away in a timely matter from what is in front of him once he has interest in it.He cannot handle suspense, loud noises or change. He gets fixations on specific things and goes with it as expressed in the ink pen situation. He is at a reading level of an fifth grader. He can udnerstand complex stories and books. He is currently writing the script for star wars 7 in which he plans on holding on to and directing when he gets older. His math skills are poor in fact he is repeating third grade this year because of the trauma of the house fire he was not able to recover and meet basic standards to move on. Yet he is still doing second grade math and cannot do cursive writing.After years of begging and counselor changes and moves here and there nicholas is finally getting the testing we need. I am happy to say that neurological testing will be done the date is to be set within the next few weeks. This testing will allow us to pinpoint what is going on with him and how he processes the world around him.In the meantime he will conintue to receive all the services he has. I have located an advocate for him here in town.and also have him authorized for disability services through our local community mental health facility. I still let him play sports. Even though he is not the star of the team the acknowledgment alone makes him feel accepted. I will continue to put him in activities like this and the more I do so his ability to fit into social settings shall progress as they already have.He has a good medicine regimen and he still sees his counselor and psychiatrist and family doctor. At school he has three hours a day in a resource center and the rest of the time he is in the regualar curriculum room. I do have him riding the bus this year to and from school which has added a good sense of responsibility to his day. He receives occupational therapy, physical therapy and counseling at the school.We do various activities and I let him live as normal of a 9 year old boys life I possibly can NEVER treating him as a child with a disability. My method is simple push him far if I cripple him he will never get anywhere. I have seen a response form him with this and the harder I push him the harder he pushes himself. Always seeking recognition his prayer was answered when the school told him he was selected to be an aide in the 3-4 year old preschool. Because of his medication nicholas is much calmer he is a sweet loving boy who loves hugs. He is not afraid of touch and we use the brushing technique with him. He absoluetly loves his baby sister. The school has seen his interaction with her and thinks this technique of using the aide opportunity for compliance in the classroom is just what he will respond too. During his time as an aide he will assist with crafts and read books to children. It will give him the big brother status at school he misses when not at home. He is not a danger to himself or others which makes him and ideal candidate. He is also a reading buddy for a kindergartner.I will continue to follow our plan we have in motion now and as I already know that can change. I am optimistic of this testing and YES I would love it to come back that he has NO signs of autism BELIEVE me I am okay with that but for the mean time i have already began falling into place as a mother of a child with this and even if he is not diagnosed with this disease I will continue to help other parents.If you think you're child is autistic here is what you Consult with doctors and the school Find an advocate in you're area to assist you with the process Push for autism testing through the school or counseling center Make sure to keep you're child in with a counselor and a psyciatrist Try to use as many resources in one place as you can for instance his counseling center, advocate and DD services are all affiliated with one another so their is no lack of communication.I hope this helps you and I will write more soon

Wednesday, December 26, 2007

Top ten things to do the day after christmas

It's over. The shopping is done, the presents are given, received and all open. Now what?
1. Read the ManualThat nifty digital camera you just got has 72 different functions. If you take the thing out for a joy ride before knowing how to use it properly, you won't get the results you expect. It's okay to read the manual, that why it was so carefully written for you. Don't be afraid. You can do it.
2. Let Your Fingers Do the WalkingSit down behind your new (or trusted old) computer and cruise the web for after Christmas sales. No lines, no parking lots...
3. Stay Clear of the MallsUnless you are a glutton for punishment, do not by any means, venture out toward the malls. The day after Christmas is traditionally the busiest shopping day of the year, with all the returns, (Aunt Maggie refuses to believe you are a size XL and insists on getting you medium, you got something from a Secret Santa that would clearly be better for someone else...) The parking lots will be jammed, the lines long, just don't do it.
4. Head Straight For the MallWell, some people LOVE this day because of the bargains. Christmas merchandise is half off and you can finally afford that centerpiece you've had your eye on. Be there first to get your hands on it before somebody else does. (But the caution about the parking lots and the lines in #3 above still hold true).
5. Get Creative With RecipesWhat to do with the leftover turkey? Mix it with a bunch of other stuff and call it a casserole!

6. Start Planning Your New Year's ResolutionsTake a hard look at where you are and where you would like to be. Start thinking about the steps needed to get there from here. But be sure to make your goals reasonable or you will be setting yourself up for failure.
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7. Be Reminded of What the Season is All AboutThis season is about the big family. Jesus came as a brother to break down the walls that cut us off from our Father, from each other, and from what is best in us. He came to draw us together as we've never been together before, and to help us forge bonds that will be harder to break in the push and pull of everyday life.
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8. Celebrate Boxing DayBoxing Day is a holiday that is celebrated in Great Britain, Canada, Australia and New Zealand the day after Christmas. Find out the different different ways there are to celebrate this holiday and how the holiday started.
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9. Holiday Decorations Storage TipsFor many people, the day after Christmas is too soon to put everything away. But for those with a hectic lifestyle, taking advantage of one more day off of work to at least start putting things away could be a lifesaver. You don't want to be stumbling around those centerpieces in March. Here are some tips that will help preserve those beautiful decorations for years to come.
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10. RelaxEnjoy the feeling that the rush is over. Sit on the couch with your new book and enjoy. Use some of the fragrant bubble bath crystals you got and bask in a hot bath. Or talk a relaxing stroll with your new outerwear.

Sorry for the lack of posts!

Life has been SO crazy lately I will update soon but I am back needed an online break to get some things in life in order and spend the holidays with the kids and families I have alot of new info to share! Talk soon!

Monday, December 10, 2007

It begins this week

As of thursday I will FINALLY have my life back as just being mom. HIs support specialist comes to our home thursday to begin his new plan as well of tons of resources for us.
No more doing all the stuff I was as far as my sons care goes his support specialist takes over all the aspects of his medical care and I just show up. No more calling places, setting appointments geting authorizations running around for release of information forms he covers it all.
I just get to be mom. I get to go and enjoy the services offered to us. I finally get a chance to sit back and soak it all in and use this time to help my son and our relationship get stronger because of it. If I need something done or a doctor recommends it I call him. He handles the rest I have to give up control of the situation somewhat and I am relieved and nervous generally because I have let it others hands before and they have failed us I won't tolerate that.
I will say it will be a switch for me I am so use to doing it all alone. And to be quite honest I am at my ropes end with it. It is way to much but I have always been that I won't wait around for someone else to do it I'll do it my damn self kind of person. I hate depending on people. But for myself and for nick I need to here. I was exhausted and bitchy I have been such an easier calmer person since things have slowed up. I am definately looking foward to giving this guy control of the situation.
I know I do more than I "have" to with nick but it's the extras that have really shown progress in him if I had been doing it and seen no change I of stopped long ago. He is in such a different place right now. Just typing this brings tears to my eyes. To think of where he is and just the changes I see it gives me hope that he will overcome this and he will he okay in life. He truly inspires me with all he has been thru he still holds strong he is so resiliant I mean at first it is hard for him but now he strikes it up with pride I am so proud to be that boy's mom.
He accepts so much responisblity for himself and even when he lacks it he acknowledges his own faults instead of blaming others. I boast that to all the staff that have been working with him and with me. I will say the break from mental health and pysch appts has been nice but he needs that follow up. He sees his family doc next month just to update him where we are at and what plan is in motion it is all falling in place.
Then the end of next month starts a new chapter we go down to hurley neuroscience to begin his neurological consulation and to start the testing which will include the formal autism testing. This added piece of information is going to be vital for nicks future as we have determined this is not a behavioral situation. This is involving the neuro transmissions or lack there of in his brain. The behavior is just a reflection of this but not the sole problem.
I am anxious and scared at the same time. I am afraid of what they will find I am even more afraid of if I will handle it or not. I am just scared in general but I always get this way when new things begin. I think it is normal as a mom. They will begin with brain scans and things like that. Perhaps the neurologist knows of better medication regimins for him. His is working okay but not enough for what I would aquire it too. Because my expecations with medication are high because we have seen strong success with it in the past. But right now he is leveled out on his meds and I am kinda concerend. All that with time will resolve itself.
Well here is to new beginnings and new found fears and a glisten of hope ill update soon! Wish us luck!

Sunday, November 11, 2007

Even Our Greatest Days Have Their Challenges



Yesterday was a better day we had a spirit hockey game to go to a local OHL game. It was a cops vs fireman game nicely nick named guns vs. hoses. It went well we took along one of nicks friends and his mom they had never been to a game before. They moved here from florida a few years ago and are just getting new to the area. We have plans to do alot more things. The boys got to go into the blue line club room kind of a VIP thing. My friend julie works with cops n kids and got us the tickets for free. Cops n kids is a program by us that does alot of community events cops presence are there to put a good face on them to the kids to overcome prejudice kids hear alot about cops especially in poor and violent areas. They gave all the children books and they also had the k9 dog there. Anderson eye associates gave away aviator style glasses to everyone who came the boys liked that.
Here are some pics from last night

The Boys with their cops n kids poster to support the program





Nick by the streeet light kind of cool pic








My niece kayla and nick she was in the crowd








The boys geting autographs at the blue line club







Nich pregame in blue line club









We love jets pizza cute pic






Nick Signing the star spangled banner



Things went well during the game and afterwards they had fireworks set up. That is where nick lost it he began crying he cannot stand the sound. At first I got irriated but then I had to check myself once again reminding myself that this was one of many things I will miss out on doing because I have to put him first. I know it sounds selfish but there are alot of times I pass up doing things because of his fears. But he has to come first I know that so I calmed him down in the bathroom had a talk with him and we went to the post game party in the blue line club.
There the boys played air hockey and got to meet the players and get their programs signed by the hockey players. I got alot of pictures. It was just another day with a friendly reminder of what my life is like with him and the things we will have to continue to over come. It was a small obstacle but again a reminder. I felt bad for cameron he had to miss out but it was his choice to do so he understands nick and is a great friend. Not many kids understand nick so I feel very blessed to have the ones we do.


We had a wonderful time that night and I am so grateful to have the time share with him. I like doing these kinds of things. It gives me a sense of normalcy amonst the chaos that seems to surround our lives.





























































































































































































































































































































































































Thursday, November 8, 2007

Progress is underway!

Well I got most of what I needed to done today as far as nick goes. I contacted the guy at scmha and he contacted his supervisor to inform her of the things that went on at our last place and that we do not need these downfalls. They have set us up with a support services cordinator that person will handle EVERYTHING for me that I need when it comes to dealing with them THANK GOD! I cannot tell you that in alone makes my life easier. I will be getting a call within the week to set something up so I just await that.


On a side note nicks meds are causing him side effects and he got sick at school again so they sent him home. Basically I am just going to get his family doc to sign a form that he is having these side effects what they should do and not to send him home. I am also going to send some pepto bismal tablets to the office for him they worked before so I am sure they will again.
I talked to the principal and basically told her he can't keep being sent home and she needs to figure out what the school needs. She went into this speal about how it's district policy when a child gets sick to their stomach to send them home. YES that is true HOWEVEr when you know darn and well this child has specific medical side effects it makes no sense then you complain about him missing figure out what you want. I took no missed step in reminding her nick is not "every" kid he is a special needs kid and the school needs to make the adjusments accordingly to do so (I swear one day I am going to tape record myself and just press play LOL ). I know the school is concerned about the fact of classmates going home and telling their parents a child is sick in the room alot and parents getting all alarmed. So I said well simple solution send a note home to parents letting them know that their is a child in the room that does on occasion get sick but it is not due to illness but to medication side effects and that no kids are in danger of becoming ill by him HELLO DUH! LOL I swear I am doing everyones jobs here and they are gettin the flippin paycheck.


Atleast I know someone else is stepping in to help I mean isn't that what is suppose to happen? I swear it's not rocket science here people but boy they make it seem like it I swear one day my life story will be a sitcom watch for it!

Three strikes WE ARE OUTTA THERE!

Today was the day of I am not taking this crap anymore! Today I hit a boiling point. I was so exhausted this evening I cried to sleep I haven't done that in forever. Kind of like the emotional hang over I have been refering to that is how I feel. Parenting is never easy but when you have a special needs child it is draining to say the least. I am constantly at battle with doctors the school you name it I fight them and today I won my fight a little more.
It began last may when after our fire nick hit a hard depression and he had alot of needs as far as counseling goes medicaiton etc. Problem is our health insurance only allows so many visits per year and we had more than whiped those out. His counselor more than assured me comm mental health will step in. For a month I kept in constant contact trying to get more appoitment approval. On his psychiatrist visit in may they reput him on the only medication that worked. I walked to the front desk I had actually ran into his councelor the week before at walmart. He told me he was going on vacation for a few weeks so to please schedule something. When I requested to do so they informed me that the week prior he had walked in told them the next day was his last day and quit and went on to a different job. STRIKE ONE!


SO I was livid but what can you do I was assured he'd be given a new conselor that was in may it was july before I went over their heads and got comm mental health to cover his appts and august before we were assinged a new counselr that's three months no therapy and into september. Since may we have had 2 counselor appts four were scheduled. The counselor went home sick one day and it has taken me a month to get a return call to schedule a new appt for today. They never even called me to tell me he was out sick that day just when I showed up they told me I was a lil irritated.


After nicks insurance kicked back in I had Comm mental health authority (cmha) evaluate my son. He met their crietria for DD (developmentally disabled) Services and we will get respite (babysittting for nick while I get a break and they pay for it YAH), conseling, psych, summer camps and so many more things. But since his therapy was already in place where we were and I didn't see the need to uproot him again I declined those sevrvices but knew at any time I could change that and there would be a wait list on the psychiatrist though.


During our appts the new counselor brought my attention to the need of neurological testing for nick but he had to find out who did the referal to the neruologist our counselor thought was the best to do so. We needed to find out exactly where on the autisim spectrum he was but more importantly testing of the brain to see where the neurotransmissions were lacking. It would consist of eeg's maybe cat skans etc. After numerous attmepts to get this referall from our insurance and actually approaching the psychiatrist myself I took matters into my own hands a week ago. I called my sons legal advocate extremely irriated and fed up she advised me to go ahead call the neurologist schedule an appointment and inform them of it and put a push for the referall.


SO I called the neurologist that the counselor was referring to. THEY DO NOT TAKE OUR INSUARANCE and to make matters worse they do quesiton and answer testing no EEG's not what we needed and even more worse the psychiatrist that we see at this center WORKS THERE and KNOWS they don't take our insurance so why in the same blazing hell would they even waste time with this STRIKE TWO!!!!!!!!!


So now I am literally foaming at the mouth screaming at his advocate in apsolute flustration. I am so lucky to have her that is what she is there for she listenst to my bitch session and then helps me with the next step we work great together. But today I was fed up and she totally understood. I hung up with her and began phone call upon phone call I went online searching for pediatric neurologists in our area. Hurley popped up. Nicks gastronologist is there and I really like it there. So I called one office but they were for adults they gave me the number to patient services. They gave me two numbers. I called the first one but they required a referal from the family (not psych) doctor and it be six months before they had an appt. That won't work! I called the second place NO referal needed and we see them Jan 28th FINALLY we are getting somewhere.


In my phone talk with his so called counselor monday I informed him of this new appt. Today was a hell day nick had school till 10:50 I had parent teacher confrences at 12:20 his conselor at 3:00 and his psychiatrist at 4:10. His orgianl psych appt was at 5:20 but since we were there they would just work us in right after his counselor was done.
I had spent the day at my grams cause she was watching the kids and I don't take madison to his mental health appts that is our time to work together. So I arrive to the counselor appt and they inform me YET again he left early sick further more the psychiatrist was not even IN until 4:30 so the whole four o clock thing was bullshit anyhow. STRIKE DAMN THREE!
Well that was it, with the mishandling this summer, the neurology, no contact and now this I was done with this place. Nick was crying he can't handle this crap all the changes is just to much on him.


So I got in the car called his family doctor I informed the nurse I was done there and that CMHA could start counseling immediately but the psychiatrist was a wait list and that is who handles his meds. I wanted to know if the family doc would cover it until then. She brought us right into the office I stopped home grabbed all of nicks papers IEP's etc etc and current pill bottles. On my way there I called his advocate who is like ready to strangle this place informed her what was going on and what I was doing and also called his counselor at the school to see if she thought this was a good step she said it was and also gave me a few names of other places to handle his mental health if this don't work out.


I Went over to the appointment the doctor TOTALLY unerstood my flustration and was furious himself with them. This doc treats his kids like his own. When he gives them their immunization shots or any shots he hugs them after and during he tell them I love you I mean he is the sweetest damn thing. He talked with us for an hour and really feels that CMHA is the best place for nick because of his age. He also said we were on a good track with the neurlogoist and assured me I was doing the right thing. He filled his perscriptions plus gave us two refills to cover us and will see him back in a few weeks just to monitor him His family doctor doesn't really deal with this stuff but he refers out to good places so he is always so much I help I really REALLY like this doctor.


It was like a huge weight was lifted off my shoulder at that moment. I didn't have to deal with this place anymore. I contacted the center told them I was done sending my son there. The lady I deal with there said she seen it coming and was really sad to see us go. She also said that his counselor will get his file to close it and to expect him to contact us to try to talk us out of it UGH TO LATE. PLUS she is sending our file to the head of the center to bring attention to this crap. She wished us good luck and told me his file will be there for 7 years if I ever need it. Now I just need to contact the guy we deal with at CMHA tomorrrow to get him in to a counselor asap and get us on the wait list for the psych doctor.


When I got home I had a very sweet message from his advocate and I called her and told her what the family doc was doing. She was so happy for us and assured me that I am not the only one dealing with this and just to relax and know that atleast at CMHA she can attest that he is in good hands.


Here is my thing on all of this. These places these so called FAMILY SERVICES are suppose to be a support system FOR US! They are suppose to be helping me and guiding me on how to help my son. Not making matters worse for me and stressing me all to hell. I am doing all the damn work and they are getting the paycheck! It is a shame that a mother who doesn't know crap about any of this can get more done in two days than these nimrods with medical degrees!
I am just so fed up with inadequate people caring for my son and I will not tolerate it any longer. Time is of the essence with him a day missed is a three day down fall for him. Nick was out of it today he doesn't handle this crap and I am tryin to keep my cool not to uspet him but I know he sensed the flustration in me. If anything I want him to see I ain't puttin up with this shit. I hope he seen that today Even the nurse noticed his eyes were showing stress signs at the docs office and did a blood pressure on him to make sure he was alright.


Once I got home and calmed down I took nick aside and explained things with him. And spent a little extra time with him tonight. The good side is he was not attached to this new counselor, his old one he had for a year and a half so that was hard on him. I told him where we were gonna go he really likes the guy from CMHA and there are more programs there like tuturoing and mentoring programs just to name a couple. I told him it was a good step ahead and we need to do this so he can keep doing better in school.


This was the first postitive parent teacher confrence I have had in years. The staff working with him now is his best team yet and they really recognize his strengths. One big change is we are gonna stop focusing on what he can't do and more on what he can or could be doing instead. Nick will defeat himself before he tries becaues he fails so much. But they see that when he realizes how much he really CAN do the pride he holds is amazing! He will now get one on one with his math with the resource teacher. He will participate in more regular classroom learning but not be requried to be called upon and will be reassured of this and it will be up to him to raise his hand to participate. The staff really is working hard with him and it is so nice to see and I do believe alot of it has to do with the fact that they are seeing more of me in there and me pushing and doing more now then ever. I think it makes a huge difference. I don't really fight with them I basically tell them what I expect and do it or else! LOL so far it works.


Well that's what happened I know it's hard for my friends who don't have a kid with needslike this to even comprehend what I go thru DAILY I will say count you're blessings for what you got. I wish nick had the lifestyle their kids do but at this point the best thing I can do is keep him active as his family doctor said things like soccer will keep him motivated give him goals and things to look foward to. So for now I try to give him as "normal" of a life like other kids he can and just hope it all falls in place real soon thanks for listening to my rantings -rach

Sunday, October 28, 2007

1/2 dozen cider donuts or a gallon of gas?

Well it is offical my family traditions are causing me more headache at the cash register year upon year. Yesterday was our family day of pumpkin farm and apple farm visits. At the pumpkin farm we get a pumpkin for each child some popcorn and those lil apple shaped plastic cups with cider in them. The kids go on a hay ride go thru the jumping thing and feed the animals.
The high winds put a bash on most of that the kids never did find a pumpkin THANK GOD cause the prices are now 6 and 7 dollars A SINGLE PUMPKIN I remember when they were just a dollar or two maybe three at most a few years ago. So we got the apple cider and two popcorns the tab came to almost seven bucks WOW! But the kids ran thru the pupkin patch and had fun I got videos and pictures so I was pleased with that as well. They liked the baby pumpkins better so they bought those at two dollars a piece that was fine.
So on to the apple farm. First my tradition is the bakery in there sells these god's gift in the shape of a cookie. Oatmeal raisin with icing I ordered two the tab came to 3 dollars FOR two yes TWO cookies these suckers use to be 75 cents a piece as well. They are not gigantic just a normal sized cookie. So then we got cider and donuts another ten dollars later a half a dozen cider donuts are up to 3.75 almost the cost of a gallon of gas! A gallon of cider was 6.25 holy moly!
It is sad because the price of everything dampered a lil bit of our trip my mom was enraged sayin how outrageous it was even though I agreed I failed to let it bother me. What it boiled down to at the end of the day I was with my kids and we were a family doing our traditions ones I have done since I was a child and having a blast. The kids didn't see price tags all they seen was the normalcy of it all and even in spite of what we went thru as a family through our house fire we still will continue to do the things that makes us happy cost aside. It may be less and far and few between but it will be done. We finished the day by getting our trick or treat baskets, madison a costume and i got the kids their goody bags. We went to a magic show at my aunts work nick won some prizes including free ice skating passes at the ice arena, some free frosty's a slurpee, and alot of bowling passes. Only thing left is to get snacks for trick or treat night, and treats for nicks classroom. All in all it was a well day and I am so blessed, but I have to wonder how many families stopped their traditions or have limited them becaues of the cost?

Gingerbread Play Dough for kids

Gingerbread Playdough1 cup flour1/2 cup salt2 tsp. cream of tartar1 cup water1 tsp. veg. oillots of cinnamon, allspice, ginger, nutmeg, whatever!(the recipe called for food coloring, red and green to make brown, but Ididn't need any after I threw in my spices).DIRECTIONS:Mix the dry ingredients. Play with the spices till you get the scent youwant and the color. Mix water and oil together first and THEN add them tothe dry ingredients and stir. In a pot, cook the mixture for two to threeminutes, stirring frequently. The dough will start to pull away from thesides of the pan and clump together. Take the dough out of the pan and kneadthe dough until it becomes soft and smooth. Allow to cool and store in anair tight container.

Oreo Balls KIDS love these!

Here's two recipes for Oreo balls. The first one is more difficult.
1 pkg. Oreos1 8-oz pkg. cream cheese1 pkg. almond bark
Twist Oreos and take apart.
Scrape cream from cookies and put into large bowl. Add cream cheese to bowl and cream together.
Put remainder of cookies into a Ziploc and seal. Use a rolling pin to finely crush.
Add finely crushed cookies to the creamed mixture and stir.
Roll into 1-inch balls and chill.
Melt almond bark.
Dip cookie balls into almond bark and place on wax paper covered cookie sheet.
Let set and enjoy!
Makes about 3-4 doz
Here's the Easier method *Use same ingredients as above1. Crush oreos in food processor, until finely chopped2. Add Cream cheese to food processor and mix with oreos3. Roll into balls and chill (mixture will be dark-black)4. Melt white chocolate bark or almond bark5. Dip cookie balls into bark and place on wax paper covered cookie sheetSet and enjoy- Yummy. Makes 3-4 doz.

Monday, October 22, 2007

There's always more to it than you think....

For some reason or another my son has aquired the art of throwing up....everyday at school...after lunch. Soon he shall tick the lunch ladies off and they will refuse to serve the child. We have yet to find the reason behind his sudden worship to the porcelin god. I have asked him if their is an issue on the play ground or maybe on the bus to where he wants a ride home as opposed to the bus.
Talking to his counselor today I pondered the thought is he "making" himself throw up. But then I thought no because he even sacrifices his earned reward of being a helper witht he three and four year olds cause he was sick.
My last resort could be this. His medication. What I am thinking of is the schedule of his eating. Breakfast I serve around 6:45 because he catches the bus at 7:08 he then takes his meds before leaving. I have been packin larger snacks like something with an apple tomorrow i am doing a yougurt and half a peanut butter sandwich. I add in apples things of that here and there snakc is about 10 am and lunch is not till 12:25 so lets base this he eats breakfast and his next full meal isnt for another six hours THAT is far too long.
Now the school says their is nothing they can do I beg to differ I will send xtra food for him I have a great reputation witht he kitchen staff because of a dietary need last year I can talk to them about storing things I purchase for him at school. That way it is on hand and accesible.
So I guess I have to determine whether or not this is medical or behavioral. Time will tell but it just one more lovely thing to deal with I love his voicemails he calls me form school witht his sound in his voice like hes dying...mom I just threw up! Thng is going to get him is out of the question since technically he is not ill. We will see what happens anyone have this problem before if so give m insight!

Sunday, October 21, 2007

Angel Food Ministries....

I wanted to share with you all this program I found a few months ago. You buy groceries you pay only 25 dollars and you get 70 dollars worth of food these are fresh foods and frozen no outdated foods or breads etc or damaged food. There is no limit on how many of these boxes you can buy and they also have monthly meat specials that are REALLY good once you buy a box for 25 dollars you can get as many of these meat specials as you like. I am a single mom am always looking for a way to save on the grocery bills. Hope this helps below is octobers menu here is the website you can go there find you state the menu and host locations in you're area then you contact them for sign up dates they take all payments cash ebt foodstamps and I believe creit cards too. THERE IS NO APPLICATION and no INCOME requirements EVERYONE can get these foods! Most are distributed through the churches!
http://www.angelfoodministries.com/

here is the menu let me know if you need help with this!


4) 5 oz. Ribeye Steaks
(1) 3 lbs. Breaded Frying Chicken
(1) 2 lbs. Salisbury Steak Entree w/ Gravy
(1) 24.5 oz. Supreme Pizza
(1) 2 lb. Chicken Chunks
(1) 24 oz. Pork Roast
(1) 16 oz. Chicken Breast Fajitas
(1) 12 ct. Corn Tortilla
(1) 15 oz. Pork & Beans
(1) 16 oz. Fresh Carrots
(1) 24 oz. Homestyle Hashbrowns
(1) 16 oz. Corn
(1) 16 oz. Bean Soup Mix
(1) 5.5 oz. Pancake Mix
(1) 7.5 oz. Mac & Cheese
(1) 7 oz. Lasagna Dinner
(1) Dessert Item
ALL THIS FOR THE LOW COST OF JUST $25
** One or more specials available only with the purchase of a regular unit. **
OCTOBER SPECIAL
#1Meat Combo Box - $18.00 (4 8-oz. T-Bones, 2 lb. Ribeye Roast)
OCTOBER SPECIAL
#2Strip Steak Special - $18.00 (4 8-oz. K.C. Strip Steaks, 4 8-oz. New York Strip Steaks)
OCTOBER SPECIAL
#3Family Convenience Meal Special from Golden Cuisine - $18.00 (Five Delicious Individual Dinner Entrees with 2 sides per meal: Cheese Manicotti, Macaroni & Beef, Beef Pattie & Gravy, Chicken & Noodle, Chicken Breast & Mushroom Sauce, Includes five breads, five milks, ten margarine cups, and five desserts.)

Saturday, October 20, 2007

Long gone are the days

Tonight I decided to make a redvelvet bunt cake. No particular reason except my inner baker creeped out. I like the cupcakes but passed on the idea. And then it got me to thinking. Long gone are the days when you made these things and sent them to schoolf or the kids cupcakes for the class or a pie or cake for the office ladies. Long gone are the days of office ladies YOU WANT to bake for LOL perhapes thats where the concern lies. Mean office woman getting posioned LMFAO no im not thinkin that . Just thinkin what a nice thing it be to do that for the teachers longe or something. Now a days you gotta pay 9 bucks for six cupcakes I can knock out four dozen for that price! I miss the days when parents were able to come into school and read books or help the teacher whenver they had time. I have to call first and set up an appointment before I can even ask my sons teacher a question after school. The prinicpal guards the doors down to the classrooms with her life. It's like we will teach you're kids but don't bug us. We want you're tax dollars but you're not welcome here and you're input is not required. WOW thanks makes me really have SCHOOL spirit right? I only have my child at this school because of the programs they have so it puts me in a spot. My daughter will never enter that school once he is gone I assure you that! Anyone else feel this way?

This is EXACTLY why I shop there!








So today began the search for a black spiderman 3 cosutme for nick. Madison has two play outfits ones a ballerina and the ohter is snow white. The ballerina has a too too a wand the shoe coves and a head band. The snow white has a slip on skirt and top , tiara, purse and those gosh for sakin plastic shoes. I will choose one of those probably the ballerina its SOOOO cute! She is only two and really doesn't get the concept of halloween so I can get away with it for now and enjoy doing so!
So back to spiderman I started callin first call was target they didnt have it but it was 24.99 when they did OMG! Meijer, walmart and kmart all were out or didn't have it. So I call halloween usa and they had it BUT it was 34.99 OMGGGGGGGGGGGGGGG AGAIN Nick yells rather loudly NO WAY tell them 9.99 is my final offer! Nice try nick! But he wanted it and he was very persistant on it so I let it be and asked the guy if I gave him my credit card number would he please hold it for me until I can drive out there NOPE they don't do that I was like GREATTTT. So I jump online and start searching stores for it.
Toys R Us Pops up and im like okay so I go there 9.99!!!!!!!!!!!!!!!!! YAH so I called the store and fabuloso willy (luv this guy) answers and he checks they have two sizes left one is my sons size so I ask the price he says 29.99 I said WILLIE WILLIE the internet of you're store has it for 9.99 he asked OH REALLY so he price checks it and its 14.99 on sale ILL TAKE IT! I figure with cost of shippin it be that anyhow online. So I ask him the million dollar question. Willie if I give you my credit card number or heck pay for it and then pick it up will you hold it for me pretty please! He resonds sweetie ill hold it for you just give me you're name. CHA CHING! AND THAT folks is why I shop @ toys r us! LOVE THAT STORE so we are off to get his costume and pumpkin buckets!

Friday, October 19, 2007

Monday is the big day for nick!

Monday will be his first day as a helper in the 3&4 yr old preschool room. He did all his work this week even homework and has no homework this weekend THAT MY FRIENDS IS A FIRST! I am so excited for him and he is so proud of his work bout time the school figured something out right? LOL Ill let you all know how it goes!

A day like this.....

This was previously written on a blog on myspace but VERY much worth sharing here just a tip of the ice berg of my days!

So I am totally running late this morning. I missed my sons bus and had to be somewhere right away so I had to call in my back up plan. I get to his friends house he rides to school with them alot. I pull up front to walk him up but where I can keep an eye on madison she was just playing and eating her cheerios. I go to the door camerons mom greets me I say a quick hello and ty and tell nick ill see him at the bus stop this afternoon. I go back to the car and out of the corner of my eye I notice something wasn't right with madison shes ghostly white! I run over to the door freaking out and open it up and this lil SHIT had gotten ahold of her poweder bottle out of her bag and COVERED her face in it! She looked like a friggin powered donut. WHERE WAS MY CAMERA! OMG It was in her hair and every where what a mess! She is sitting there totally idle knowing she did something wrong and like she is waiting for the scolding I didn't even give her it. It was so precious as I am grabbing anything i can to whipe this off her she just sits there with this mommy im so sorry look in her eyes I just melted but damn she scared me I had been on the opposite side of the car when I noticed that something wasn't right. OMG I think my heart is still racing! This girl is gonna be the death of me! Needless to say I was late.....

The Reason I have ads on my page....

I want everyone to undestand this as easy as possible. I am an affiliate for several companies I chose to apply to. These companies review my page and decide whether or not they want to let me advertise their companies. I have had two particular companies write me back and not in a computer generated way but a personal email from the person in charge saying how excited they were to be a part of a page supporting autism. That is why those ads are there please do support them it has nothing to do with compensaition for me to be honest I have found some really unique and different companies to share with you and the list will continue to grow. I personally like ELF makeup for a buck YAH I am there! I have had david's cookies before they are to die for. But along with those willing to let me advertise their products SOME wouldn't for generic reasons but these companies have denied advertising to a page that supports autisim awareness SHAME ON THEM soooooooooooo I will list them so you know what companies NOT to buy from!

Companies not willing to advertise are as follows...
As of 10/19/07
Lego shop at home
Fashion Bug
Linens N Things
Seabear smokehouse
Chicmystique.com
Carlson Hotels
Country Inn & Suites
Giggle

Truth VS Denial

I do not know if anyone else has this happen but lately I am beginning to wonder if what I deem to be lies told by my son are that or are they simple denials due to his inability to process information correctly. Case in point the dreaded homework question. He will sit there look me square in the face and tell me no but when I request to see his folder it's like he is a catholic in confession and BOOM out comes well actually I got one page. Why in two seconds flat did a lie go to the confession mode. When I scold him about lying to me he exlaims I didn't lie I just forgot. Did he forget? Or has he gotten that good of decieving me? Has anyone else ever went thru this and if so how did it stop or some tips be nice! TY!

Thursday, October 18, 2007

Our story.....

Nicholas was my first child born. He was only five lbs one ounes at birth and had breathing troubles that later turned into chronic asthma. Nicholas always struggled to meet up to his peers. He was a happy baby though always silly and fun. But at age three something changed. He became almost unresponsive to redirection. I constantly struggled to keep him on track or to even get his attention. He was defiant and never followed directions. School was always a struggle and I always blamed the daycare for what was going on and sat in a pit of deinal. At only three years old he was kicked out of daycare because of his behavior. I knew that day something was seriously wrong. I began my struggle to understand what was going on with him and how to fix it. I started with simple reward systems, diet changes, herbal supplements and intense counseling it masked the problem but nothing seemed to work.
Things seemed okay for a while but they really began to change. He started to get aggresive and easily flustrated. He constantly talked back and could not handle social situations or changes. I made the gut wrenching decision to begin ritalin medication of concerta. It was a drastic mistake he had a very rare reaction to the drug. Within minutes of being in sunlight he had third degree burns across his his forhead and nose and cheecks the skin started peeling away from his face within mintues. He began acting sporatic and uncontrolable emotions emerged suddenly I recieved a panic call from his preschool.
Once I got him home it took myself and my granmother along with my mother to restrain him. He was screaming hysterical and crying I had never seen this behavior before. His eyes were glassy and his heart was racing out of control. I rushed him to the emergency room to seek medical assistance. They told me he had a reaction almost like being on speed the doctors could only watch the meds take their course and prepared me for a very long night. Their was nothing they could medically do.
It was the most frightful night of my life. I held him as he screamed and cryed and restrained him when his behavior became uncontrolable. I cried for hours watching him I felt so helpless and afraid I was going too loose him it was four thirty am before I was able to get him to sleep. That morning nicholas awoke around ten completley lathargic and his breath was slow. I called the family doctor but she was no help. I knew to never try these drugs again and it was years before I allowed doctors to try a then new drug out strattera which was a miracle drug finally he was controlled thru this medicine but it took alot more to get us there. But even that lasted a short time.
After our frightful bout with ridlun I kept pushing the counselors to search deeper but noone would listen but I never let up. One of the aides at his school quit because she was so stressed out by him and his behavior. He was juming off tables throwing toys and his behavior was borderline psychotic. I removed him from the program for a few weeks but nothing helped he returned and I began utilizing the school system.
When nicholas entered kindergarden I was blessed with the knowlede and wisdom of a what most would call seasoned teacher. She immediately recognized the signs of his problems and became the voice that would begin a process I as in no way prepared for but desprately needed. After months of fighting I finally got the school to do testing at kindergaden level for beahavoiral problmes and he was diagnosed ADHD. I knew this diagnosis was not accurate but with it he began to recieve resources through the school district that are still implemented today.
Since this diagnosis I have switched one family doctor and two counselors to the one we have now who is by far amazing but other diagnosis have been added include Bipolar and PDD (pervasive develemental disorader). Both of these conditions are serious conditions the PDD is on the autistic specrtrum (don't even get me started on that) but not condisered true autisim and the school to this day is non compliant with any diagnoses of ASD. Since I have not went through FORMAL testing for this condition he is still labeled specific learning disabled (sld) they may add cognitive later on but the emotional disabled is what I am fighting to have proven. His las IEP testing was done shortly after our home caught on fire last year. We lost everything including the home and all contents as you can imagine this was devestating for him. The rules state to emotinal disabled testing can be done within 6 months of a traumatic incident. We are now at six months so the push for that testing has begun.
Nicholas has been diagnosed symptomatic of autism particullary Asperger Syndrome and has been labeled high fuctioning autistic by both his family doctor and his psychiatrist. In fact everyone on the planet sees the autisim in him EXCEPT the school so to shut them up I will fix that. He can make eye contact and his behavior has been modified at times. He still cannot control his emotions and socal settings are still a complex situation for him. Processing is difficult for him he cannot move from one thing to the next quickly there has to be a complete break form one event for him to move on or he gets lost in the clouds.
For instance if he is writing with a pen and you ask to use his pen he cannot hand you the pen and move away to another task. Instead he will sit there requesting it back frequently and make subtle remarks to the fact he was using that pen for this or that reason. He will get disgruntal and if time enough passes he will meerly try to take the pen back himself as oppose to it being given back. He simply cannot break away in a timely matter from what is in front of him once he has interest in it.
He cannot handle suspense, loud noises or change. He gets fixations on specific things and goes with it as expressed in the ink pen situation. He is at a reading level of an fifth grader. He can udnerstand complex stories and books. He is currently writing the script for star wars 7 in which he plans on holding on to and directing when he gets older. His math skills are poor in fact he is repeating third grade this year because of the trauma of the house fire he was not able to recover and meet basic standards to move on. Yet he is still doing second grade math and cannot do cursive writtting.
After years of begging and counselor changes and moves here and there nicholas is finally getting the testing we need. I am happy to say that neurological testing will be done the date is to be set within the next few weeks. This testing will allow us to pinpoint what is going on with him and how he processes the world around him.
In the meantime he will conintue to recieve all the services he has. I have located an adovcate for him here in town.and also have him authorized for disablilty services through our local community mental health facility. I still let him play sports. Even though he is not the star of the team the acknowledgement alone makes him feel accepted. I will continue to put him in activities like this and the more I do so his ability to fit into social settins shall progress as they already have.
He has a good medicne regimen and he still sees his counselor and psychiatrist and family doctor. At school he has three hours a day in a resource center and the rest of the time he is in the regualar curriculm room. I do have him riding the bus this year to and from school which has added a good sense of responsiblity to his day. He recieves occupational therapy, physical therapy and counseling at the school.
We do various activities and I let him live as normal of a 9 year old boys life I possibly can NEVER treating him as a child with a disablilty. My method is simple push him far if I cripple him he will never get anywhere. I have seen a response form him with this and the harder I push him the harder he pushes himself. Always seeking recognition his prayer was answered when the school told him he was selected to be an aide in the 3-4 year old preschool. Because of his medication nicholas is much calmer he is a sweet loving boy who loves hugs. He is not afraid of touch and we use the brushing technique with him. He apsoluetly loves his baby sister. The school has seen his interatcion with her and thinks this technique of using the aide opportunity for compliance in the classroom is just what he will respond too. During his time as an aide he will assist with crafts and read books to children. It will give him the big brother status at school he misses when not at home. He is not a danger to himself or others which makes him and ideal canidate. He is also a reading buddy for a kindergardner.
I will continue to follow our plan we have in motion now and as I already know that can change. I am optomistic of this testing and YES I would love it to come back that he has NO signs of autism BELIEVE me I am okay with that but for the mean time i have already began falling into place as a mother of a child with this and even if he is not diagnosed with this disease I will continue to help other parents.
If you think you're child is autistic here is what you
Consult with doctors and the school
Find an advocate in you're area to asisst you with the process
Push for autisim testing through the school or counseling center
Make sure to keep you're child in with a counselor and a psyciatrist
Try to use as many resources in one place as you can for insatance his counesling center, advocate and DD services are all affiliated with one another so their is no lack of communication.
I hope this helps you and I will write more soon!

Why being a voice for autistic chilrdren is so important.....

Some people wonder why you have to be a voice for autism. That is because autism doesn't have one. If anyone spent five moments with an autistic child you would see it is not in them. What most brush of as behavorial or moderate retardation the fact of the matter is they don't have the abilites you and I do. Their senses and their repsones are seperately different from ours. I am a mother of an autistic son but he truly does not understand his disability. He believes he is dumber than the other kids at school. That was an impression I changed very fast! He is not dumb matter of fact when he applies himself he is extremely smart! Autism is Autism no matter what various degrees of the spectrum a child is on an autistic child has special needs and has a set amount of rights most don't understand. The one thing I tell parents the most is NEVER SHUT UP! Always be active. Don't worry about what the school thinks of you think of you're childs needs only. I push his school daily I lay the repsonisibilty of his education upon them because it IS their responsibility. You are a parent you have responisbilities to you're childs physical, medical, social, nutrition and so much more well being. A few hours of home work a week does not put you in charge of a child education. You are not a teacher or a speicalist These people were trained and are paid to provide the necessary tools for you're child succes SO YES it is their responibility you only need to make sure it is followed through. Speak out and be active become a pillar of strength for you're child. You are their main voice and you have to be heard. Noone can shut up a parent and noone should every try. I am not intimidated by doctors or legal or anything. He is my son! And as his mother it is my job to fight. Think of the irony in this...if I fight to hard I am a pain in the butt parent. If I do not fight at all I am neglective and uncaring a CPS caseworkers dream. I am neigher of the two I am a mother who cares and I will be respected for my fight for my son. I am not fighting for all autstic children in that school I am you're worst nightmare. Remember people I am a soccer mom as well and NOONE wants to mess with us suv drivin soccer moms!

Asperger's Syndrome

This is what they are trying to rule out for my son

Written by Stephen M. Edelson, Ph.D.

Asperger's syndrome was first described by a German doctor, Hans Asperger, in 1944 (one year after Leo Kanner's first paper on autism). In his paper, Dr. Asperger discussed individuals who exhibited many idiosyncratic, odd-like behaviors (see description below).
Often individuals with Asperger's syndrome have many of the behaviors listed below:
Language:
lucid speech before age 4 years; grammar and vocabulary are usually very good
speech is sometimes stilted and repetitive
voice tends to be flat and emotionless
conversations revolve around self
Cognition
obsessed with complex topics, such as patterns, weather, music, history, etc.
often described as eccentric
I.Q.'s fall along the full spectrum, but many are in the above normal range in verbal ability and in the below average range in performance abilities.
many have dyslexia, writing problems, and difficulty with mathematics
lack common sense
concrete thinking (versus abstract)
Behavior
movements tend to be clumsy and awkward
odd forms of self-stimulatory behavior
sensory problems appear not to be as dramatic as those with other forms of autism
socially aware but displays inappropriate reciprocal interaction
Researchers feel that Asperger's syndrome is probably hereditary in nature because many families report having an "odd" relative or two. In addition, depression and bipolar disorder are often reported in those with Asperger's syndrome as well as in family members.
At this time, there is no prescribed treatment regimen for individuals with Asperger's syndrome. In adulthood, many lead productive lives, living independently, working effectively at a job (many are college professors, computer programmers, dentists), and raising a family.
Sometimes people assume everyone who has autism and is high-functioning has Asperger's syndrome. However, it appears that there are several forms of high-functioning autism, and Asperger's syndrome is one form.
The Autism Research Institute distributes an information packet on Asperger's Syndrome.

Plain Talk about PDD and the Diagnosis of Autism

This is what they are currently diagnosing my son with!
Let's start with the obvious: the label PDD (Pervasive Developmental Disorder) is a poorly understood, uninformative, confusing, disliked, and should be abandoned. The sooner the better. In fact, it should never have been adopted in the first place.
Over the years I have talked and corresponded with thousands of parents who have told me their child "has PDD." I often respond by saying something like, "Your child doesn't have PDD. There is no such thing as PDD. Your child may be autistic, or have a condition like autism, or many characteristics of autism, but he doesn't have PDD because there is no such thing. PDD is a label concocted by psychiatrists to cover up the fact that they don't know what your child does have."
If any parents have been distressed by this blunt, unexpected harangue on my part, I would be surprised. The vast majority seem relieved to at last hear someone giving them straight talk about PDD. Parents live with their child 24 hours a day, 7 days a week. These parents realize that their handicapped child will in all likelihood be the central focus of their lives for the rest of their lives. They want to know the truth, insofar as the truth is known. They don't want to be misled or misinformed by sugar-coated verbiage masquerading as informed fact. If we don't know the right label for their child, let's tell them that up front, rather than hide our ignorance behind the mystique of a pseudo-scientific label, presuming knowledge we don't have, like PDD.
I am very much aware that creating suitable names for "psychiatric" or "behavioral" disorders is a difficult and thankless task. Look at what we have now: Schizophrenia is Greek for "split mind." Mental retardation is a euphemism for low intelligence. Hyperactivity merely describes what everyone knows too well--the person is too active. Autistic means "day dreaming."
Until we know what causes these things we are stuck with using a somewhat descriptive term to characterize them. I'll agree to that, as a matter of necessity, but where does PDD come in?
The passage of time has led to widespread usage of the terms, schizophrenia, mental retardation and autism. There is little or no likelihood that PDD will be afforded similar acceptance.
In the Autism Research Review International (ARRI) (1991, Vol. 5, No. 2), we summarized an excellent statement, signed by 16 prominent European and U.S. professionals in the field of autism, titled "Autism is not necessarily a pervasive developmental disorder." The authors noted that although the term PDD was introduced well over a decade ago, it has not really caught on, and is unfamiliar not only to lay people, but to the politicians and administrators, most of whom--thanks probably to Rain Man--are aware of autism. The article observes that the term "pervasive" is particularly inappropriate, since severely retarded persons, many of whom have chromosomal defects which affect every cell in their bodies. Autism, they point out, rather than being a pervasive disorder, is in fact a specific one, characterized by deficits in social and cognitive functioning.
Quite apart from the misleading and inappropriate semantics of the term PDD is a practical matter: autistic children and adults unfortunate enough to have the PDD affixed to them have often been--and continue to be--excluded from programs and services designated for those with autism, and which would benefit them.
Clearly, the PDD designation, along with its cumbersome bureaucratic baggage (i.e., PDD-NOS: "Not Otherwise Specified") should be relegated to the Archives of Failed Attempts, where it will have plenty of company, while we go on about our business.
There are many more children with autistic-like disorders than there are children with autism itself. When I founded the Autism Society of America in 1965, I urged, and my recommendation was followed for many years, that all ASA stationery, brochures, and other printed materials carry the wording "Dedicated to the welfare of all children (later 'children and adults') with severe disorders of communication and behavior." The need for an encompassing title for this group was evident even then.
Of the various labels that have been suggested, the one I like best is "autistic spectrum disorder," which, I believe, was first suggested by Wing and Gould in 1979. The advantages of this term are obvious. For one, it acknowledges that there is a range of problems and of subtypes, and it does not pretentiously claim to be based on knowledge that is not yet available to us.
At the Autism Research Institute we have been working for over a quarter of a century on the development of more objective scientific means of diagnosing children with autism and related disorders.
When my book Infantile Autism was published in 1964, it contained, as an appendix, a checklist designated "Form E-1" (E for experimental). Within a year E-1 was replaced by the Form E-2. As of June 1993, the Autism Research Institute has collected over 16,800 E-2 forms, completed by parents of autistic and possibly-autistic children in over 50 countries. (Form E-2 is available in eight languages.)
Form E-2 is designed for completion by the child's parents, and asks questions about the child's early development and about language and behavior through age five an a half. (After age five an a half, autistic children begin to change in many ways, so it is better to rely on behavior prior to that age.) Once we receive a completed E-2 form from a parent or professional, we enter the data into our computer, derive a score which tells the child's position to the continuum ranging from "classical autistic" at one end to "not autistic" on the other, and mail a report to the sender. We have performed this service, free of charge, for well over a quarter of a century for thousands of parents and professionals world-wide. (Readers of the ARRI are invited to request E-2 forms and avail themselves of this free service.)
A major purpose of this effort is to collect data for statistical analysis. There is no doubt that the "spectrum of autistic disorders" contains numerous subtypes, some of which are large enough to be identified by as our database of almost 17,000 E-2 Forms. We are already aware of some of these types, such as classical--Kanner's Syndrome--autism, fragile X autism, Rett syndrome, and candida-caused autism. My colleague, Dr. Stephen Edelson and I are conducting factor analyses and cluster analyses of the E-2 database, in order to identify and characterize these and other subtypes. The database is large enough so that subtypes identified by cluster analysis within one segment of the database can be confirmed by cross-validation on E-2 data which was not used in the original identification of subtypes.
As this work advances we will report on progress in the ARRI, and in other places. Subtypes identified through this means of statistical analysis can be validated in a number of ways, independent of the E-2 database, including family history variables, clinical laboratory tests, and differential responses to drugs and other treatments. It is thus hoped to place the diagnosis--as well as the treatment--of "autistic" children and adults on a more scientific basis. I believe that progress in this field will proceed faster if we rely on the identification of subgroups through the analysis of statistical data, rather than on constructs based on speculation, conjecture, surmise and subjective impressions.
In the meantime, let's get rid of "PDD!"

Action Alert: Urge your Senator to Support Increased Autism Funding Senate to Take Up Health Funding Bill

This week, the Senate will take up the FY 2008 Labor, Health and Human Services and Education Appropriations bill. This important bill funds autism research, public education, early intervention, and education programs. The Autism Society of America is urging all Senators to support this important bill. The Senate Appropriations bill includes full funding for many of the programs authorized by the Combating Autism Act. It also increases other programs of importance to the disability community. Specifically, the bill includes:
$37 million for the Neurodevelopmental Disabilities and the Developmental-Behavioral Pediatrics Training Program. These University-based programs provide long-term, graduate level interdisciplinary training, as well as services and care for infants, children, and adolescents with disabilities.
$16.5 million for the CDC’s autism programs. These programs include the Centers for Autism and Developmental Disabilities Epidemiology (CADDRE), which studies potential causes of autism, and the Autism and Developmental Disabilities Monitoring (ADDM) Network, which provides critical data on autism prevalence, growth, and causes.
An overall increase of $1 billion (3.5 percent) for the National Institutes of Health.
$11.24 billion for Special Education State Grants, a 4.2 percent increase over FY 2007. The legislation also provided $540 million to Special Education Grants for Infants and Families, a 3.1 percent increase over last year.
Click here to send an email to your Senator, urging him or her to support this important bill.

Scientists eye an enzyme as target in fighting autism

CHICAGO (AFP) - US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday. ....
In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.
In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.
The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.
"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.
MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.
These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.
The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.
The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.
In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.
The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.
The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.
Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.
"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.
The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.

Things that make you go hmm

We live in what most would call the suburbs. Their are always bike riders, dog walkers and joggers passing our home daily. Even the high school up the road's track team runs past our home daily. So I am not suprised when I seen these things. That was until I saw something that made me go what?! yesterday.
Two ladies came down the road walking. For no particular reason I took interest in watching them walk. They had their uniforms on they worked at the post office up the street odviously on their lunch break. They had their walking shoes and bobby socks on with their postal office shirts and athletic shorts.
That is not the suprising part though....they were walking rather vigirously and as they got closer I noticed something in their hands. They both were enjoying a double scoop waffle cone ice cream! NOW I am no health expert or excersice guru but this really seemed to defeat the point of their walk. I do not know why but it struck me funny and I walked back into my home barely able to control my laughter.

Wednesday, October 17, 2007

Choices.

Nicholas was a very a happy boy. His favorite things were the statue of liberty, flags and fire engines. But sometimes nicholas made bad choices and his mommy didn't know what to do.
One of nicholas favorite things to do was to go to dinner with his mommy and get a big sundae for dessert. But nicholas stopped being good at the restaurant and his mommy had to fix the problem.
So one day nicholas and his mommy headed to the restaurant they liked to eat at. Nicholas was so excited because an ice cream sundae was on it's way to his mouth!.
Before they got out of the car nicholas mommy asked him a question. Nicholas she said " you havea choice to make before we go to eat. you can sit down and eat all you're supper and be a good boy and earna ice cream sundae dessert, or you can not be a good boy and not get an ice cream sundae dessert, which one do you choose nicholas?". Nicholas looked at his mommy with a big smile and said " I want ice cream mommy I will be very good". "Okay" she replied.
Nicholas and his mommy went to the restauraunt and ordered dinner. But nicholas kept getting up and jumping in the aisle. He would not use his inside voice and did not eat all his supper.
When dinner was over his mommy paid the waitress and took his hand to leave. "Mommy I didn't have my sundae yet" he shouted. " I know nicholas but you made the choice to be good but you were a bady boy and now you don't get you're reward" she replied.
Nicholas was very sad. He cried the whole way home. He did not understand what happened. That night nicholas cried in his bed. His mommy came into his room and explained what had happened. He promised his mommy he be a good boy but he wasn't. She l et him have the choice of his reward and it was his wrong choice he did not get his sundae dessert. Nicholas was very mad at himself.

The next week nicholas and his mommywent to their favorite restaurant and this time he knew what to do. He sat right down at the table. He used the coloring crayons and coloring book the nice waitress gave him and colored his mommy a pretty picture while they waited for their supper. He ate all his supper and when the waitress brought the bill his mommy said "no ma'am he earned his dessert".
That night nicholas got a BIG ice cream sundae. Ice cream tasted even better when he earned it. Everytime nicholas and his mommy go to eat now he sits and eats all his supper and each time he gets dessert. And Ice cream sundae!

The day I realized I was raising a man

Pre written Sept 11th 2007

Did anyone cry today? Did you take a moment out of you're day to say a moment of remembrance to those who lost their lives that day and continue to do so in this war? Did you thank you're men and woman who serve this country fo giving you the rights you have? Whether you agree or disagree with what is going on now in this world did you just take a moment to remember. If you did God Bless you're heart. If you didn't you are not alone. Only 6% of americans recognize September 11th. SIX PERCENT that is sad. But I do not want to write a bunch of garbage I want to share this with you.
I watched the news recasts today and listned to the radio. I drove with my head lights on. I took a moment of silence on the side of the road at 8:46 a.m. in my car and held my daughters hand.I did my remembrance.
I hope this speaks louder than words to you what happened today. What my son did today makes me a proud mother.
In spite of my sons school not recognizing today or teaching my child what happened...he took a moment of his day at lunch and said a prayer. He said the prayer for the victims, for the children who lost their mommies and daddies and he said it for our men and woman in the service. He just bowed his head and said a small silent prayer for to himself. Noone asked him or told him to. And when he looked up three boys beside him and one little girl had done the same. None of them said why but they all knew what they were oding.
I cannot say to you how proud he made me today. I heard it thru my friend who works as a lunchaid at his school and it brought a tear to her eye.
I find this astounding....
My son does not see what has really happened since that day six years ago. He doesn't understand the various colors of alert. He does not watch the President give speaches. He doesn't judge the President. He does not comrpehend the full degree of this tragedy at all.
The only thing my son turly knows is he watched t.v. that day and days after....and seen all the firemen and police men and other rescue workers helping people and saving lives. He seen that and he admires that. He admires the people who helped others they did not know He admires our country for telling that bad man he can't do that to people.
So when this little boy oblivious to politics and why we should or should not be in this war. of the actual loss of life that day, takes a moment of his 3rd grade lunch time and says a prayer of remembrance to the victims and moment of gratitude to the men and woman who serve this county, I know I am raising a Man.

The sleeping child......

Have you ever went into you're childs room at night and just watched them sleep? I do it all the time. I just sit there watching them so peaceful and content like little angels. Sometiems I pick madison up out of her crib and just hold her. The warmth she feels when she is sleeping is so soothing. It makes me feel closer to her. I use to do the same thing with nick he's too old and to heavy for that now. I feel so at peace when I do that I know it sounds crazy or weird but even at the end of the worst day I can sit there and watch them sleep and just feel good about life and everything elsc in my world. I guess it's my solitude and it brings me happiness. espceically when the sleep but yet they are smiling that is by far the most amazing sight for anyones eyes.

This is me......

Welcome to my page I hope you enjoy what you see here. I am a sinlge mom a survivor of domestic vilonce a victim of a drunk driver, and a fire victim in which we lost our home. But most imporantly I am a mom and a strong and intellegant woman. I make no excuses for my life and how it has happened I only long for clarity in this world. I have a son who is going thru autism this is new and we are in the beginning of this process I hope you follow our journey. I look foward to sharing with you my life and I hope in turn you can see that we are all so much alike noone is that much different and we can all learn from our mistakes because that is what defines us as a human being!

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