Single Moms Raising Autistic Sons

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Saturday, December 27, 2008

"Positively Autistic" YOU MUST SEE THIS VIDEO

"Positively Autistic" (click on the link) is a short video that must be viewed by anyone and everyone, not just those associated with autism. It is so unique and different from all those videos that show individuals with autism as being prisoners of an incurable disease. It dispells the myths that autism is something that must be cured and that autistics are people who must be made more "normal" and indistinguishible from neurotypicals so that they will blend in with them in society.

Please watch this video and take the time out of your day to do something that may change your perspective on how you view and understand autistics to be. The video is written in part by autistic individuals who speak out against being treated like they are diseased and abnormal, they only wish to be respected just as they are and understood to be functioning individuals with something to contribute to society/their community.

This video may change your life and leave you with a good feeling about how autistic individuals feel about themselves. If you do watch it, please leave a comment on how you feel and think about it.

Monday, December 22, 2008


Griffin and I went to North Carolina over the weekend and had a wonderful time. I reunited with friends that I have not seen nor heard from since 1996 and I could not believe how much time had passed and how all the children had grown up and had babies of their own. 

We didn't stay as long as I would have really liked but 2 days and 2 nights just had to do and it was time well spent. Griffin had everything that made him happy..........the DVR, the DVD player, all of his "printers", and all of his plush characters. I bought him all of his favorite foods and he was quite the happy camper. 

We will return again soon because it is only about an hour away and I love them all so very much, I used to be a nanny with my dearest friend, Lisa and it just amazes me how her children have matured. I have missed them all so much through all those years but I plan to make up for all the time lost and never shall we part again and lose touch with one another.

Sunday, December 14, 2008

Our New Humble Home

We are finally moved into our new home and Griffin has adjusted quite well especially considering that he does not have a computer or his DVR there, only his DVD player and VCR. He slept all by himself in his very own room and frankly I think that he is quite proud of it because when he got to his NaNa's house he told her all about it.

It is sparcely furnished but it is still home and I love having my own space again. We come over to my parents' house during the day so that we can use the computer and so Griffin can get his NaNa fix. So far it seems to be working out just fine and even Abby has made the adjustment, the first night neither of us slept well then I woke feeling exhausted subsequently I had the anxiety attack from hell. It was one of the worst ones that I have ever had and it took forever to go away. Afterwards I napped off and on all day but was still exhausted and felt like I had partied for days and was stripped of all the nutrients in my body. I took an old medicine as prescribed by my doc and slept very well two nights in a row so I am feeling awesome now.

Saturday, December 06, 2008

My Other Blog

Please take a moment and read my other blog about how Griffin was abused for having autistic behaviors in school. I posted a note that was sent home with him and it is a doozy and it proves that his for lack of a better term, "teacher" April Hendricks, didn't know what she was doing and obviously doesn't know how to deal with an autistic child.

That's all for now, I will post more soon about the apartment and other stuff that is going on.

Monday, November 24, 2008

Fresh New Haircut and Teeth Cleaning

Griffin just got a fresh new haircut and the best part is that he sat there all by himself for the first time and cooperated with the barber sitting perfectly still. Also Griffin went to the dentist and for the most part he laid very still and cooperated with the dentist and hygienist too. He got a clean bill of health...........NO cavities! His 6 year molars are coming in and he has a loose tooth in the front.

I am so proud of my little guy who is getting to be a big guy because he is maturing and growing up so fast. He has just recently shown improvement in dealing with the outside world and coping with any surprises that may come along while we are out.

On Thanksgiving my sister and her family will be coming down from North Carolina which will be great. I think that most likely Griffin will not be partaking in the "feast" because he hardly eats anything, no variety, and try as we might he probably will not even taste the food, those days are long gone. I hope that one day he will begin trying new foods again so that there is more variety and more nutrition in his daily diet.

We will be moving out of this house where we have been for two years into a place of our own. Once again we will have our own space and Griffin will have his own bedroom. It is only a one bedroom but I will sleep in the living room so that Griffin can have the bedroom all to himself. I am so excited to make a fresh new start and to be close to my parents' house will be a bonus. We will only be about 15 minutes away from them. Got to get lots of new stuff to furnish the house and we've got to move next month because I am beginning school online in January. I will be very busy in December so I don't know how much blogging I will have time for but I hope to be able to keep you updated

Saturday, November 15, 2008


Griffin is a Teletubbies fanatic! I believe that the show is meant for preschoolers but it makes no difference to him because it is practically all he talks about. He also loves Zoboomafoo which I am thrilled with because it is so educational and is fun for me to watch as well, it is all about all kinds of animals domestic and exotic. Griffin is almost 7 years old and I hope that by the time he is at an age where he is social that he has gotten over his Teletubbies craze, not to worry though because it is not as though he carries them around everywhere.

I just hope that at some point Griffin will be interested in age-appropriate characters and will talk about things that are interesting to his typical peers when the time comes. I guess that I shouldn't get ahead of myself and worry about the future, it is not as though I worry per se but it does cross my mind once in awhile.

It is official but not quite complete but.............I am a student again! I will be taking courses from an online university and majoring in English so that one day I can finally finish writing that book that I have been working on for quite some time. I am thrilled to be intellectually stimulated again and to be studying my all time favorite subject. It has been since I was 21 years old that I have attended a university and I am a firm believer that it is never too late to go back to school. It may take me awhile but I shall savor every moment of it. To begin with I am going to take it easy because of course I will still be home schooling Griffin so I need to know how much I can handle while doing both. Certainly it will be a challenge but I am so ready for it and I feel confident that the more work I have the harder I will try and the more that I will accomplish.

The weather is just perfect somewhere in the lower 60's windy and sunny with the leaves falling all around and I just love it! This is truly my favorite time of the year. I love wearing my sweaters and having the wind blow through my hair, it is so exhilirating.

Griffin's handwriting is coming along nicely and he is staying in the lines much much better. There is now a distinct difference between his upper and lower case letters and his handwriting is much more ledgible as well. He still loves drawing and takes advantage of every opportunity to do so. I have found that he is not so easily frustrated lately when doing his work and is able to sit for a wee bit longer per session of learning. We still take breaks of course but he isn't as eager to hop up and announce that it is time for a break so much anymore. My little guy is growing up and maturing more and more each day.

Oh yes, I am feeling way better today that I have been since my surgery and it is day 10. I actually ate two small pieces of pizza and was so excited to eat some "normal" food again. Today I am not watching the clock and wondering when I can take another pain killer so that my mouth would stop hurting, the meds are not as necessary today which is wonderful! Can't wait for Thanksgiving so I can really eat some great food and also to spend some time with my family from North Carolina.

Monday, November 10, 2008

OMG! IT HURTS! It's Been 5 Days Already!

I was under the impression that things would get better and that with time I would feel better but NOOOOOOOOOO!

I feel as bad today as I did the moment I woke up from surgery after the pain meds began to wear off. And what's worse is that the pain is now in my ears as well. So now it feels as though I have full blown ear infections and a butchered throat. Yes, I am being a complainer right now and I realize that it is not going to help me feel any better but what the heck, what else have I got to do? So if there's anyone out there who needs to have a tonsillectomy, I highly recommend that you take lots of time off of work and make sure that you have someone who is going to help you out and nurture you through the entire process. And believe me...........the pain medication does NOT work!

Okay, that's enough...........I am finished with my whining and shall retire to bed, lie down and watch some TV.

Friday, November 07, 2008

Things are going relatively well but Griffin has been exceptionally upset that his mommy is not feeling well and that things are so different. It is really difficult to talk, especially in the evening so when he had his meltdown I had to just step aside until he calmed down so that we could discuss what was bothering him. Of course he couldn't come up with the words to describe how he was feeling and why so I gave him his meds and I laid down waiting for my anxiety medication to kick in. Then I finally got him to climb into bed and snuggle and now he is asleep.

I do not know if I need to increase his meds or not because his meltdowns are becoming more frequent lately and he is losing control of himself again. There is no talking to him when he is so much beside himself so I just have to take a few deep breaths and hang on until he is able to get a hold of himself.......then we talk.

It just amazes me how much going under anesthesia can wear out a body for several days and I suppose that the stress that surgery puts on the body is a major contributor to the fatigue and lethargy. I just wish that I could sleep more because that is what I need the most of in order to bounce back more quickly. There were some complications during the surgery, apparently I bled out pretty bad and the doctors were concerned that they would have to give me a transfusion. My blood pressure was so extremely high that they kept me overnight in the hospital, everything that they tried wouldn't help so they gave me some phenegran for sleep but I kept waking up in excuciating pain. Nowdays they are very strict about how often pain meds are given so.........I was just so happy to get home and to put it all behind me and hopefully soon I will be able to do all the things that I am accustomed to doing each day.

Wednesday, November 05, 2008

Surgery Today.......Yipee!

Not looking forward to the pain! Granted, it is merely a tonsillectomy but I have heard nothing but horror stories about how bad it is going to hurt and how much longer it takes an adult to recover compared to a child. One point that was brought to my attention is that I will probably lose weight since I will be getting all of my nutrition through a straw and if that is true then it will all be worth it and perhaps it will help make the pain more bearable.

Guess I will be sleeping a lot and I am hoping that it won't be long before I am able to sit here at the computer and communicate with my friends because I truly doubt that I will feel like talking on the phone. I am so grateful that mom is able to help me with Griffin because if we were in Anchorage I don't think that I would be able to have the surgery.

I hope that Griffin will have an understanding of what is going on, that mommy needs to sleep because she is not feeling well. I am sure that mom will be able to help him to understand that mommy is not able to play with him or to take him places. Of course I will explain it to him again later before I go in and I certainly hope that he doesn't get upset because the sweet little guy has such a huge heart and we both are so very close, especially now that we have been home schooling.

It is so strange, that little twinge in my chest that lets me know that there is a certain degree of apprehension, as much as I try to not feel remains. It is just an outpatient procedure and really quite routine for the doctor but every time that I go under anesthesia it does tend to make me a bit nervous. I do not plan on going anywhere for a very long time because there is a higher purpose in my life and nobody can do it like I do!

Tuesday, October 28, 2008

Autistic Child Is Abused At Elementary School In South Carolina

Please take a look at the other blog that I have and its content about how my son was abused at his elementary school here in South Carolina. I am so livid that there's nothing I can do legally since I cannot afford a lawyer to represent me at a due process hearing against the school district.

I have decided to go public with our story, I am going to send the information to the TV stations and newspapers and see who might be interested. If I have to I will go to the Oprah and Dr. Phil web sites and e-mail them this link to see if they have already done a show on disabled children who are abused in school and there's nothing that can be done about it. The parents cannot represent themselves going up against a group of sharks who call themselves attorneys and who eat parents, especially single parents, for lunch!

Take a moment, there are only two entries but they are both quite telling. Thanks you guys for all of your support and I hope to see some comments left here and there for me. Your opinion counts with me!

Friday, October 17, 2008


As you can tell, Griffin absolutely adores horses. He was so thrilled when we went to visit our neighbors who have horses and they offered to let him sit on the mare of the foal who you can also see in this photo. The neighbors, our new friends, were so kind and so helpful because they gave us information about activities and organizations that have special needs horseback riding and events. There is a place that is about 40 minutes from here that has special needs riding "classes" and I just know that Griffin would love to go, if the price of fuel keeps going down then we might be able to do it, and I would love to see him so happy as he is when he is around them.

On Wednesday, Griffin went to swimming and for part of the session he worked really hard but then he became tired and frustrated and began, for the first time ever, to shout when the OT was talking to him and giving directions. She had asked me if I had changed his meds but I had not and let her know that it was probably because he had finally become so comfortable with her that he was just being himself. Later, when it was time to go to soccer, he told me that he did not want to go so we stopped by to see the horses instead. I am so glad that we made that choice.

I am still not sleeping, tried Ambien and it is NOT working at all for me, and I go to see my psychiatrist next week. I sure do hope that he has some kind of miracle drug that will work, continue to work, and help me sleep through the night. As it is now, I finally get to sleep around 4:00 or 5:00 and it is really hard to get up when Griffin tries to wake me around 7:00 or 8:00 a.m. The times that I have gotten "restoritive sleep" it was so incredible and made such a difference in my quality of life. I had very little pain and the Fibromyalgia was, seemingly, put at bay. Without sleep or with very little, one feels very old and it is so hard to move around, the mind is not clear, and the moods are not so great either.

As far as Home Schooling is going, Griffin is still doing great with his photographic memory, he soaks up everything that we go through. I bought him a really cool ant farm that has this substance in it that is a gorgeous blue which is their food and water so there is no maintainence. not only is is totally clear and unbreakable but it illuminates at night and glows a neon green. So far he is not thrilled with it but I think it is because we do not have any ants in it yet. I believe that once I gather up some that he will become more intruged by it, at least I hope so or I will send it back. The Discovery Store online has some pretty incredible stuff but much of it is too old for him even though his typical/NT peers are probably doing it.

Think that I am going to go lie down and read, Griffin told me tonight that he didn't like books......which bothered me a lot and though I try, I cannot seem to spark an interest in them. I wonder if what I am teaching him, with the (expensive) books that I have, is helping him at all.

Wednesday, October 08, 2008

Playing In A Soccer Game

Here's Griffin playing soccer, he kept his eye on the ball the whole game, running at times but always watching the ball. I think that he actually got to kick it a few times but the most important part is that he made it through the entire game from 5:30 - 7:00. I couldn't stop smiling even when my face started hurting. I am so proud of him, he has come such a long way in such a short period of time although he did not pay any attention to his fellow players, just for him to enjoy playing was a big deal.

One of Griffin's OTs told me today that he did very well at therapy, on Monday, with his group (of boys) during his session. They went outside and played on an obstacle course and each one had to come up with ideas on how to change things around when they were first in line. She said that Griffin did an excellent job interacting with the other boys which is so exciting to me, I think that the group has been very good for him because there is so many boys and both Speech and his OT are present.

Home schooling is going great still, we studied a lot of science this week and combined it with art which turned out really well. Art is a wonderful medium for him to work on his fine motor skills, his cognitive skills (science through art), and his emotional expression. He is a kinesthetic/visual learner so every time that we can combine our studies with art we go for it! One day I will put a picture of one of his pieces on here so that you can see how amazing an artist he is. It seems that each time he creates a piece, everything that we studied he commits to memory and it is set in stone and the information is there to stay. He can recall ever bit of information when asked after only going over it one time.

It is helping me to overcome the bitterness and anger that I felt about how he was abused at the school because I know that there is no way that he would have progressed in such an environment and now he is so much happier. At least this is how I cope with the guilt that I feel for sending him into a place that was causing him so much confusion and mental and emotional pain.

Apparently, I do not have his meds tweaked properly because he is still a bit too sleepy during the first part of the day and into the afternoon, he wakes up in the evening and makes up for lost time. Today he did go swimming and he always loves it and is showing great improvement there as well. He may act sleepy before we get there but once he is in the pool he is just fine and after he is finished his energy level is up also. Griffin dislikes going out of the house and going to appointments and/or running errands so he tends to be or act sleepy/tired then the most. If only there was a way, that I knew of, for me to help increase his energy level through proprioceptive or vestibular input while we are out. Guess that I need to ask the OT about it because while he is at home he does it himself by jumping on the mini tramp and swinging but he has no means to do it by himself while we are away.

I have been having bouts of horrid anxiety and mania for several weeks now and they are so severe that I cannot not otherwise function. I usually have them about every two days, a product of rapid cycling Bipolar Disorder. Finally today I went to see my doctor and got some meds specifically for anxiety and boy am I grateful! Severe anxiety is like being jailed inside one's own body and struggling to get out because it feels like someone has a remote control and is hitting fast forward constantly. It feels so uncomfortable to be in one's own skin especially if there is fatigue (from lack of sleep) and feeling as if on speed all at the same time. My body hurts like hell the next day and I sleep for about 12-14 hours because of the Fibromyalgia and sheer exhaustion from the whole situation. I am so grateful that my mom is around to help me out by watching/entertaining when necessary, and feeding Griffin.

That's about it, I bragged about my special and wonderfully brilliant little guy and complained about my health..............all in a day's work! Hope you all are doing well and enjoying life!

Friday, September 26, 2008

Some Positive News, We're All Happy Here!

This is my new blog, you will find there the first of many reports that his teacher sent home with him and it will be apparent that she was punishing him for his autistic tendencies and that she didn't know what she was doing. If you disagree, feel free to leave a comment, especially if you think that I am way off base and that there is no foundation for seeing things the way that I have.

Griffin is doing great with homeschooling and is learning a great deal. I have found ways to get him to work on his handwriting so he has improved a great deal and he doesn't seem to mind or he is so excited about the content of what he is writing so much that he simply doesn't pay attention to that part. What I do is to get him to write in his journal what he wants as a reward for when he gets enough stickers for doing various tasks. So, he writes all about it, forming his own sentences (and learning about punctuation) and often he will write far more than I thought that he might. Half the page is blank so on top he draws and colors, with colored pencils, exactly what he wishes for. His artwork is so advanced and it is the only thing that he attends to without distraction so I make sure that he gets to do some each day whether it is task related or just for fun. Since he has access to lots of paper then usually he will just sit down and start drawing on his own, I have saved much of it and it is already apparent that there is a rapid progression in his abilities. Since I have been an artist for nearly my entire life, I am pretty excited about Griffin's love for drawing and painting and for what the future might hold.

Griffin started taking Abilify about a month ago and it has helped him tremendously, he complains of being tired quite often but it is usually when he doesn't want to do something (imagine that!). When he has free time he is running around, swinging, and jumping on the trampoline but he is far more stable than I have ever seen him and his meltdowns are non-existent now! He will start to get upset but it is very short lived and it is far easier to talk to him and to get him to cooperate and comply. He doesn't have the same "manic" energy anymore and it is not necessary to try to get him to calm down therefore he attends much better during most of his activities/tasks.

I had a procedure done on my uvula and since it was done with a laser it gave me second degree burns in my throat so I had a week of intense pain, insomnia, and feeling like there was never going to be an end to it but I am nearly healed now. The ENT told me that if the problem occurs again then I will have to have my tonsils out..............not looking forward to that because I believe that it is going to turn out that way things look right now (it is already happening again). I am due to see him again in a month so I will keep you posted.

Loving this weather, it is my favorite time of year no matter where I have lived throughout the years, just wish that it lasted longer. I hope to catch up on reading blogs and letting you all know that I am thinking of you, I do miss my blogging friends and would love to know how you are doing.

Saturday, September 20, 2008

One Angry Mother!

I have restrained myself up until now and NO MORE will I hold back! The truth will be known to all about how my son and I were treated as he went to his school that is located in upstate SC. I would add which area we live in but I do not feel safe doing that at this time. However, I plan to start a blog specifically on the topic of how this school mistreated my son and took advantage of me, my own disabilities, and how I was bullied into taking an entry off of this blog and the only reason I did it was because I was terrified of retaliation.

It is my hope that everyone in the public school system reads this and especially the new blog because the truth needs to be exposed and this is my only avenue and the last resort because apparently the school district and even the assistant superintendent admits to telling the principal to tell me to take my entry off of the blog! That is an outrage and I will not stand for it and I am tired of sitting around and doing nothing about it. I am protected by the first amendment and there is not a damn thing that they can do about read on people and I hope that you are all squirming in your seats as you get upset and perhaps you will wish that you had done things differently and that you had treated my son and I with more respect and that you had followed the laws, the federal laws more closely. You know damn well that you broke laws, especially the teacher who was such a coward that she couldn't even talk to me! Yes, you! You didn't even follow your own policies and procedures...........such as, having the parent/teacher conferences that you were supposed to have after my son got a "red" light on his daily report. What is your lousy explanation for that? You are an EMR and you are not even qualified to teach a child with autism. You punished my child for being autistic and I plan to make public all the reports that you sent home so that they all can see how you wrote negative reports nearly every single day and even though I begged you to write something positive you absolutely refused.

I know what kind of gossip goes on with all of you who seem to not know how to mind your own damn business and seem to think that you can judge people and then treat their children accordingly. You may think that because I was kind that I was stupid as well. You made the major mistake to think that my kindness was weakness. I have seen more of life than all of you combined and traveled all over the world and never...............NEVER have I seen such pitiful people who desperately need a life instead of putting your nose in mine and thinking that my son didn't deserve to be treated with kindness and respect.

Through this blog and through the new blog I am going to do everything in my power to get the truth out there and let people know what you are all about. You may all stick together which is fine but it will not help you now, there is nothing that one or all of you can do to stop me!!!!!!!!!!!!!! Who is in charge now? You will regret all that you have done and you all will be exposed.

Have you figured out that I am ONE ANGRY MOTHER yet? Please people, stay tuned, it will provide you with plenty to gossip about and this time the source of the gossip will be YOU! I cannot wait for you to read my new blog and to be haunted by your handiwork. I am excited for everyone to see the papers that my son was sent home with and all that he was punished for...........such as, for being autistic! I hope that you realize that I have tons of readers and my new blog will have just as many if not more due to my efforts to make it so.

You all have miserably failed my son and he lost an entire year of education and learning skills and perhaps he suffered in your "care" because of his mistreatment. Paybacks are hell people!!!!

Saturday, August 02, 2008

My Beautiful Sleeping Angel and His Buddy

Can you tell that Dot loves Griffin? Every night she sleeps on his pillow snuggled up to him and if he moves then she just rearranges herself as well. They are so adorable together. I've got to get a picture of Griffin smiling so that you can see his missing tooth, he is so proud of losing his first tooth.

Everything is going well here and I am preparing for September 1st when we will begin our homeschooling! With each day that passes I become more prepared and more informed on what to do and how to do it. We have just about everything that we are going to need to have a full and beneficial curriculum. I have already started using a system that is part of the positive parenting program and it is working like a charm with him. We have had NO tantrums at all, he is just too busy thinking about how he can do better and be a good listener. Today as we went out in the horrible heat and humidity, we were shopping it was such a challenge for him......he hated it but he tolerated it because he had incentive and we got through it with no hassles at all. I am so proud of him! He is really becoming a "Big Boy" using his manners and maintaining self control and making healthy/wise decisions.

My dear friend E. and I share and compare notes with our methods and the wealth of information that we have gathered as we have done an enormous amount of research, has been a great friend and fellow homeschooler. I know that I keep repeating myself but I am so excited about all the possibilities and all that we are going to accomplish. I have done nothing but prepare for our newest endeavor and I am determined to make it work in our favor. At least I know that my son is getting the best and that he is being treated with tenderness and respect, that he is going to be challenged and tested so that he can reach his full potential. And if he just so happens to have some sensory issues then we will address it immediately and not deny that his behaviors are a product of his need for sensory input. He will have lots of breaks in order to help him get his vestibular and proprioceptive input to help him maintain his attention and help him stay focused.

I don't want all of my entries to be repetitive so I will stop now and move on to something else. Griffin is doing great in gymnastics and with swimming. In fact, he has made great improvement and incredible progress in swimming. He is using his arms and legs simultaneously which helps him to move forward, not by much but it is still a great improvement. I think that he has learned to actually breathe in deeply before holding his breath so that he can stay underwater longer. I asked his OT about his low tone muscles and she confirmed that it is not uncommon for autistic kiddos to have low muscle tone. She did add that he is able to develop strength regardless but it will take some time. So mommy will have to help him as much as possible to build up strength by keeping him involved in activities conducive to building muscle strength and tone.

I am going to sign off now because I have a million things to do and lots of reading to do. Hope that all my dear friends are doing very well............happy and healthy..............not to mention..........staying cool in the summer heat. Send me an e-mail or leave a comment and let me know how you are doing.

Wednesday, July 23, 2008

Yo Gabba Gabba!

This is one of Griffin's fantastic creations and if you happened to have seen "Yo Gabba Gabba" then you will recognize these characters. I do not know if he is just interested in them because they offer something different than what he is accustomed to or what but lately he has become very enthusiastic about them. Griffin has been drawing and painting quite a bit lately, spending much more time being artistic than ever before and the likeness of what he creates is amazing.

His verbal skills have improved tremendously and he has expanded his vocabulary as well. Today we went to see the free movie, " The March of the Penguins" and he sat so still and really seemed to enjoy it. I was surprised because it is a documentary and there are no climaxes or exciting parts to it, but it did have sad parts of course since it was a true story of the life of the penguins in Antarctica.

My Fibromyalgia has been kicking my behind lately and each day is different just as every night is different as well. I saw the rheumatologist last week and all he did/could do was to increase my meds and to give me a cortisone shot in my back where there is a knot in my back that hurts constantly. The pain I have had for so many years (and worse too I might add) but it is the fatigue that gets to me so bad and there is nothing that the doctor can do about it except to try to give me the right meds in an attempt to get me to sleep through the night and hopefully feel refreshed in the morning. That has not happened yet, typically I get up around 5:00 a.m. I try to stay up because if/when I go back to sleep I feel horrible and wake up I feel absolutely miserable. Maybe the tweaking of the meds will eventually help me somehow. With all the years of experience that I have had for so many years, I have little faith in what is available (medically) therefore, I must be strong and just tough it out. I tried Lyrica but it had some horrible side effects such as really bad sleepwalking and running into walls with absolute confusion, it was as though I was on some kind of hallucinogen and when I woke I felt like someone had used my body as a punching bag. Oh well, life goes on!

I am preparing for September and I am very excited, I have been doing so much research and reading faster than I think that I ever have and loving it. I am looking forward to lots of new things coming into our lives with tons of progress, higher self-esteem, and renewed confidence in his abilities. Griffin's intellect along with his excellent skills and talents will be further recognized/revealed and built upon while he begins to excel in certain areas and learn new coping mechanisms with his sensory needs. The areas in which he does not necessarily thrive in will be made simpler for him in order for him to not lose interest in them and actually have fun doing what he was once fighting against.

No longer will I have to worry about what my child is doing while away from me for so many hours nor will I have to depend on someone else to do what they are supposed to do and in the process leaving me out of the loop. I guess that you could say that I do not have that kind of trust anymore as I once had because I have been failed but more so, he has been failed and I do not accept that which is totally unacceptable.

Thursday, July 17, 2008

Learning for Life

Griffin loves going to gymnastics so much as you can see here as he laughs and smiles the entire time. It is so funny when he stops in the middle of something and says that he is tired but then he keeps on going doing things his own way most of the time. The exercise is so good for him especially since he does not get much at home. We have no yard here at home because it is just woods so it is important/essential that he has other outlets in which to exert himself. Today we have swimming and of course that is one of his most favorite activities in the whole world. Since being out of school he has shown some great progress in many areas and the one that is so significant is that he has had practically ZERO meltdowns or negative behaviors. All I have to do is to talk to him and be sure that he understands what his boundaries are and he has been such a great listener. If only he had that opportunity while in school he would have behaved so much better..........I believe. If only had good reports of his behaviors perhaps I would have been able to help him out by pointing out what was appropriate vs. what is not. The issue that I have with his schooling is that I never knew what the heck was going on with him for the better part of the day and being in the dark about my child does not please a pro-active mother such as myself.

I have made a decision but I am not going to share what it is until the people who need to be notified find out first. It is necessary that they learn what has gone so wrong and how that has helped me to come to this final decision that I have. I am very excited about all the possibilities and all the creativity that is involved. This venture in which we are about to partake is very significant and the future looks so bright now. I know that deep down inside that I am doing what is in Griffin's best interest and because of that I will feel confident that he is safe and thriving in his life. He will learn all that is important in life and how to be an independent individual who is not afraid of making choices because they might be wrong. I did not teach him that so I do not know where he got it from but for sure I am going to fix it! That is something that could stick with him for the rest of his life and cause him to have low self-esteem. Griffin is my treasure and my teacher and he deserves to have only the best in life.................Period!

Life is beautiful especially when one feels that she has changed what she is able to, accepted what she cannot change, and has the wisdom to know the difference. I am eternally grateful for my precious child and there is nothing more significant than his achievements and growth. Griffin deserves to have the opportunity to reach his full potential in all areas ergo he will have all that is humanly possible, all that is within my reach to share with him.

Friday, July 04, 2008

Kitty Dot Com

Here is Griffin's new kitty, her name when we got her (from the animal rescue shelter) was "Dot" and later on that day he told me that her name was, "Kitty Dot Com". I thought that was so funny that he thought of something so clever all on his own, he is such a bright big boy.

As I write in my book each day I enjoy reading about the progress that he has made over the years and all the great memories that we have of Alaska. Just recently I read from 2005, how much everyone at Griffin's school loved him so much and was so kind and non-judgmental of me, always showing me respect, never treating me like I was just an incidental in Griffin's life. Both schools that he went to were stellar in every way and I miss that so much. I truly miss the people of Alaska because they were so nice while at the same time they minded their own business and were too busy to gossip and worry about what other people would think or what somebody might say about something.

Have a great summer to all of you who so devoutly read and comment on my blog. Thanks for all the support that you have given throughout the years. Hugs to all of you!

Monday, June 30, 2008

Having a Great Summer

I tried to upload an image of Griffin's new kitty but for some reason it wouldn't work so I will try later in another post. Griffin is having a wonderful summer and staying pretty busy. He loves going to gymnastics and is improving with each visit. Of course he is still going to and loving swimming each week. I found out that the theater is showing free movies for kids each Tuesday and Wednesday which we are going to start going to on Wednesday. He seems to be making great progress even though he is not in school, in fact, since he has been out his vocabulary has increased a lot and his understanding of concepts have also increased, he is growing up so fast. Griffin even has a tooth loose and he is so excited for it to come out, he knows that it means that he is a big boy and that he is growing up. Our case manager for DDSN got the Cuddle Swing approved by Medicaid which was about $$200.00-$300.00 or so and it has made a huge difference in his life. He spends so much time in that thing and between that and his huge ball that he bounces on, his behaviors have been next to nothing.........extremely rare. When Griffin went to school in Alaska the teacher there was so awesome because they started each day with an obstacle course of sensory toys, tubes, etc......and there was always music playing that they danced to at circle time. Griffin would come home each day singing his songs from class. That teacher became a very dear friend of ours and she should have won teacher of the century award! We miss her so much. What helped me a great deal in knowing what he was and wasn't doing, was that she would write to me nearly every day to let me know all the GOOD things that he did as well as the less desirable things. That way we could work together as a team in working with him in order to contribute to his success. The teacher Griffin first had when he was 3 years old did the same, we worked together and I was always informed of what was going on with him. They both had two helpers/assistance and they all worked together to make a well organized environment for the kids. It is a good feeling being involved in my child's education especially since he spends so many hours away from me, it is a good thing to not be left out of the loop. Griffin has learned a lot since we have been here, mostly his language and social skills have improved. I look forward to him spending some time in the 1st grade class in the fall. I am sure that he misses his teachers and his classroom buddies, they are so nice and I believe that he really likes them. When I go with them on field trips he seems to get along well with everyone and it seemed that the teachers were well organized. The class got to do lots of fun things in the classroom and on their trips. I've got to get back to work on the book which is coming along nicely. I just finished reading Temple Grandin's book, Emergence, and it was very enlightening but kind of scary at the same time because she really went through some tough times socially and a lot of internal conflict. I highly recommend that anyone who works with or has a child with autism has it is in their library (at home) because I have found it to be useful and I can use it for reference as Griffin grows older and approaches high school then college.

Wednesday, June 18, 2008

Griffin's Summer

So far Griffin is having a great summer, he had his first gymnastics class yesterday and he loved it. He certainly gave it all he had and was a pretty good listener for the most part. Of course it being his first class he needed some extra help just as the other kids his age did. I think that we will be busy this summer doing various activities such as going to the library for story time, going bowling, swimming, gymnastics, and his group (OT & Speech). I have been reading a lot of books about autism lately and learning so much more and besides it makes for great research material for the book that I am writing. It is constantly "A work in progress" but I am really quite satisfied with how it is going. It certainly does take dedication and lots of patience but it is going to be so worth my while. Griffin makes a great subject, I shall not run out of material. It is just a matter of knowing when to stop and to be happy with what I've got.

Speaking is time for me to get back to writing, I will attempt to keep the blog updated and share all the news of how/what Griffin is doing. Perhaps next week I will have some photos from gymnastics.

Sunday, May 25, 2008

My Gecko Guy

My happy little guy is being a ham again, he just loves the camera. He has on his favorite gecko shirt from Geico, this is his newest love. He will run from one end of the house to the other if he hears a Geico commercial coming on. The Teletubbies are his favorite again, I thought that he had lost interest in them a long time ago but he is back into them again. His interest in Chucky Sue, the Chinese dwarf hamster has nearly disappeared so mom and I take her out and pet her every day. She is so adorable and sweet it is hard to resist holding her. Often she will fall asleep if you pet her for awhile.

The IEP went well, it was a bit too brief in my opinion but so far I guess most everything was covered even though my questions weren't answered because I didn't get to ask them. Griffin's teacher is wonderful and so sweet so are all the other staff who work with him. Next year Griffin is going to go to regular ed. for two hours and we will see how it goes and if he does really well the amount of time will increase. Their logic was that they didn't want to just push him full time and possibly overwhelm him. I believe that Griffin could do a lot more than they are fascilitating and for some reason they are keeping him in the special needs classroom. I think that he needs to be more challenged because he gets so bored easily. He seems to love learning and doing his homework so I feel confident that as long as he has an understanding 1st grade teacher then he is going to thrive in that environment. I only hope that this teacher has more than just a little bit of knowledge and more than just hearing or reading about autism, otherwise he will be judged as not being capable of staying in a regular ed. classroom.

I am finally realizing that Griffin's teacher is underestimating not only me but Griffin as well. Whenever I bring up his behaviors, which is all she seems to focus on, she becomes all nice and down-playing it all as if she had never written anything in the first place. On the IEP papers that I signed, which I obviously shouldn't have, it states that the behaviors were addressed and that is so incorrect! I brought them up and nobody wanted to talk about it and I was an idiot for signing the papers. Jamie didn't help me out, in fact she hasn't helped me out for quite some time because I have been writing to her for several months about it and got no reply and if I did it was exceptionally brief.

I heard that there is going to be a male assistant in Griffin's room and I have issues with that. I am going to make sure that there are safeguards in place to be sure that my child is safe because my child WILL NOT go through what I have as a child and I will do everything in my power to make sure that he is safe!!!!!!!!!!!!!! I don't care what anybody thinks or how much they think that they know this man, and I am probably the only one who has even considered the scenario/the possibility of this man being a predator. No matter what, my child will be safe and if they do not take precautions to keep him safe then ..........I guess that we will just see how I can really be when I feel that my child is in potential danger.

I am not angry yet but we shall see what the future holds and how much they really are concerned about his safety.

Wednesday, May 14, 2008

Life Is Good

Griffin is simply radiant in this picture, he is having so much fun with all of his characters (as he so fondly refers to them). He is still a bit mellow/low key and is not fully recovered but he does seem to be feeling better since his surgery. We went to my niece's 21st birthday dinner/party yesterdaty and we didn't get home until around 9:30 (way past his bedtime) so he didn't get to sleep until around 10:00 or so and I didn't get to sleep until about 1:00 a.m. I have been reading so much and writing so much that it seems that the outside world does not exist except when it is time to pick Griffin up from school and/or have to take him somewhere. But this is what I thoroughly enjoy (writing that is) and would love to do it full time, I could never get tired of it.

I plan to take Griffin by the gymnastics class for boys 6-8, it is called tumbling which is going to be the best for him anyhow. The only conflict in his schedule is that he has swimming the same exact time and date so I am hoping that the swimming can be changed to accommodate both activities. I believe that having gymnastics each week could teach him some physical activities that could help him regulate himself at home and maybe even while in public. Between the speech, OT, swimming, and now gymnastics he should be staying pretty busy this least I sure hope so because of my allergy to the sunlight...........weird, I know......I inherited it from my dad and his dad.

I will do my best to keep everyone updated, hugs to you all.

Friday, May 09, 2008

Griffin Had Surgery Yesterday

Griffin was such a trooper yesterday when he had his tonsils and adenoids removed, he didn't cry and was so mellow before and after the procedure was done as you can tell in this photo. It was all worth it because last night he was breathing so easily and quietly I had to watch his chest just to be able to tell that he was breathing. I held up a lot better than I thought that I would I guess because prior to the day of surgery I had kept being positive and confident that he would do just fine through the entire time and he did just that.

He has not been eating real well which I do not blame him for so he has mostly just been drinking water and fortunately we have been able to talk him into taking some Ibuprofen a couple of times during the day and once or twice he took some Amoxicillin. Right now he is playing with his Sesame Street characters and the Teletubbies of course.

I did an interview with Dateline NBC about the trial that I was involved in earlier this year when I went to Alaska to testify against an individual that I once worked with many years ago in Anchorage Alaska. I do not know yet when it will air but I will keep you posted. I did the interview on the 7th of this month and I have a good feeling that it will be a great program because they asked some very important questions and left no stone unturned.

I cannot remember if I mentioned that Griffin's IEP is going to be in about two weeks from now and I am looking forward to talking with his teachers and everyone else involved in working together on common goals and reflecting back on all the progress that he has made. I firmly believe that he is going to thrive now that he is able to get quality sleep since his breathing has improved tremendously. I feel really bad that he felt so bad for so long and that I didn't even realize it until he kept getting strep, had a foul odor in his mouth, and the snoring just kept getting worse. Now I believe that he is going to just feel better all over which will make such an incredible impact on his behaviors and his attitude towards learning and focusing on school and all the things that he loves about school and all his other activities.

I hope to get him involved in gymnastics this summer for a couple of reasons: he will have another activity to keep him busy during the few months he is out of school and he has shown a lot of interest in tumbling which he frequently tries to do at home. We need to re-schedule his swimming therapy sessions to a different day so that he can do both during the week.

Sunday, May 04, 2008

Visit Tina and Her Boys and Younger Brother, Show Some Support

Griffin loves to play with the shaving creme while taking a shower and he also loves to wear his goggles which is helpful because I can wash his hair without getting shampoo in his eyes. He is such a goof ball............always making mommy laugh.

Lately Griffin has been doing so well in school, the reports from his teacher have been glowing and I am so very proud of him as he has been so much more attentive and such a good listener too. We have an IEP on the 20th which I am looking forward to indeed. I look forward to adding some new goals and objectives as he has reached most of his old goals. At home Griffin has been jovial and very positive, laughing and being so entertaining.........what a pleasure it has been to be around him.

I do not remember if Griffin is supposed to attend the regular ed classroom next year or what but because of how he has been progressing I have high hopes for him and I believe that he can and will reach higher goals. Griffin just loves to learn constantly asking questions and looking up words in the dictionary (child's version) especially with Spanish. Every day he asks me what words are in Spanish. I don't remember that much from my Spanish classes in high school but fortunately I do recall how to pronounce the words (for the most part). I purchased the Rosetta Stone program in order to help him learn Espanol and it is working wonderfully! It sure does make things so much easier. I am very impressed with their method of learning by immersion, it really keeps his attention and he retains all that he reads. It is great because I get to learn at the same time which does come in handy because we get to use the words in conversation which leaves an indelible impression on our minds.

If you haven't visited my dearest friends please do visit Tina and her two boys plus her younger brother at:
please let her know that you support her and wish them all the best. They are such beautiful souls who are now experiencing very challenging and heartbreaking times right now. I think that if she sees how many people care enough to stop by and how much you care for them it would be a great way of showing her a lot of support. Recently Tina's mother has passed and she has been struggling with how traumatic this event is/can be. I can only imagine how tragic it would be if I lost one of my parents...........the pain would be absolutely unbelievable! Let's all visit her frequently and leave her comments so that she will know that we all care.

I just want to add that I am eternally grateful for all that is in my life, Griffin's health and safety and all the other simple and wonderful people, places, and things in my life..........I do my best to show/express my gratitude each and every day. I am thankful to have this blog (which I have had since 2005) and to have all of you visiting my blog and leaving comments for me......thank you for letting me know that you came by.

Monday, April 21, 2008

Griffin and Chucky Sue

This has got to be one of the absolute best pictures of Griffin ever! Chucky Sue is a Chinese Dwarf hamster that he got over the weekend and they are getting along famously. Chucky Sue has been a great motivator for Griffin, he will do whatever he is asked to do just as long as he gets to pet her and he loves to watch her run around in her clear ball all over the floor. Having her has taught him patience and gentle touch and he is learning that she has to sleep during the day so he has to wait until she wakes up in the evening before he gets to spend time with her outside of her cage. Since we got her on Saturday Griffin seems to have forgotten that he wanted a kitty really bad so maybe the hamster will serve as a substitute for a kitty at least temporarily.

I don't know if you can tell by the photo but Chucky Sue is a super tiny little gal which makes her irresistible and she is so sweet and she seems to like being handled which is a huge bonus. Read below of more details about Griffin and his new friend.

Have a sunshiney day!

Sunday, April 20, 2008

Our Trip To The Pet Store

Yesterday Griffin wanted to go to the local pet store so that he could see the kitties and have the chance to pet them so of course we went and he did get to pet some sweet kitties and he loved every moment. He still wants one for his very own but it is still a "no go" at home so we just took our time so that he could get his fill at least for a day. We went around the store looking at all the different animals and I encouraged Griffin to hold a Guinea Pig but he was not impressed so we moved on to the Oh so cute dwarf hamsters and right away he started laughing and showed a lot of interest in holding them. I figured that since he is not allowed to have a kitty then the least I could do was to get something that he would enjoy and be able to play with. About $60.00 later we left with his new companion and all the stuff to house the little girl with things to chew on, and to play with so as to not get bored.

Griffin immediately had a name for her "Chucky Sue" which he borrowed from Sesame Street, Telly monster has a hamster with that name. I do not have a photo of them together but I will sometime today and so I will post it later. So far Griffin has handled her with a soft and careful touch and he seems to understand how important it is that he is very gentle. Chucky Sue has obviously been handled a lot because she is so mellow when being handled and she doesn't get stressed out, she seems to be content and comfortable in her new home.

Griffin woke me up at about 3:00 a.m. which is becoming a nightly ritual for the two of us. It seems that one of us wakes in the wee hours of the morning and we cannot get back to sleep. I am trying some new medicine for the Fibromyalgia which has not helped me so far, guess that I just need to give it some time to start working. The Cortisone injections in my back has helped the pain in that area but also made me feel manic and has contributed to the insomnia/mania that I now have and it will not wear off for at least a few months. I had forgotten that I am super sensitive to steroids so I will just have to wait until it begins to wear off and hope for the best in the interim.

After the pet store we went to the local library to check out some books on how to care for a hamster and as luck would have it I discovered two books that are Spanish/English dictionaries. These are ever so helpful especially since Griffin has been studying Spanish for a couple of months now and he always wants to know how to say words in Spanish. About a month ago I purchased the Rosetta Stone program for learning Spanish and so far he loves it and has learned a lot from it. Griffin seems to be quite content and comfortable with his new found interest in learning a new language so I am doing my best to facilitate and encourage him at the same time I am letting him go at his own pace so the time spent working with it can vary from 10 - 30 minutes a day. Fortunately I took 2 years of Spanish in high school and still recall how to pronounce the words which really comes in handy.

Check back again soon so that you can see the pictures that I am going to post of Griffin and Chucky Sue, it will be worth the visit. I hope that you, my friends, are doing very well and that you are having a great weekend.

Friday, April 11, 2008

The Special Olympics, Fibromyalgia, Surgery For Griffin

For the second year Griffin has participated in the Special Olympics and I think that he had a much better time than he did last year. He participated in more events and seemed to be more comfortable with his environment therefore he was free to enjoy himself and was not affected by the large crowd of people. After everyone had finished their participation they all got on the bus and headed for Cracker Barrel and ate some lunch, I believe that it was a great time for all involved and none of the kiddos had meltdowns and they were smiling the entire time. Griffin did so well with his interactions with his classmates and it was evident that there were certain kids that he enjoys their company because they were affectionate, exchanging lots of hugs and smiling ear to ear.

Just as I was beginning to think that it was all in my past never to be realized ever again, it came back..............the Fibromyalgia that is. I have chronic pain in my entire body, even just to touch my skin hurts and it pervasive going all the way to to my bones and joints. My general practitioner prescribed Lyrica but in the end after trying it for a couple of months, it didn't help me at all. I am so very tired all the time taking frequent naps and waking up feeling just as bad as when I went to sleep. I wake in the morning so early that it is absurd and just furthers my fatigue. I am not able to go back to sleep, strangely enough, for example I woke at 4:00 a.m. and even though I feel exhausted I am just not able to get more rest. I have an appointment with the rheumatologist next week and I hope that there is some solution available for me because several years ago when I had it there was nothing to treat it. I just hate being so grumpy all the time because I feel so darn crappy. It truly interferes with my quality of life and sucks the joy out of day to day living, I am still able to laugh occasionally, how could I not when Griffin is happy nearly all the time and is always being silly and helping his mommy get through the pain by succumbing to the joy and enthusiasm that he exudes each and every day?

I took Griffin to the ENT doctor yesterday and found out that he needs to have his tonsils and adenoids taken out. It will enable him to sleep more soundly and get better rest since he snores so bad and breathes through his mouth all night furthermore he has sleep apnea so I look forward to him getting better rest and I believe that it will improve his quality of life. The surgery is going to be on May 8th (out patient) and the only drawback for him is that he will not be able to participate in activities/exercise for two weeks afterwards.

It is 6:28 a.m. and Griffin just woke up so I better get him ready for school, I will attempt to write again soon and post more pics. Hugs to everyone, have a wonderful day!

Sunday, April 06, 2008

Autism Is A World

Autism Is A World
Follow this link to the CNN web site that has several other links concerning autism. I found this film to be insightful and full of hope for those parents and individuals living with autism. I also read some articles about how other individuals with autism (adults) feel about Sue Rubin's film about herself, she is 26 years old and uses facilitated communication. If I can watch a movie and it changes my perspective on issues then I feel that it was a worth it to spend a few moments of my time to find understanding and hope for parents and individuals who struggle with certain aspects of ASD.

I found this DVD at the local library and by reading the cover I found out that the movies were distributed/donated to libraries around the country so if you call your library and ask if they have it then it is worth the trip to go check it out. It is only about 40 minutes long but it sends a powerful message for not only those familiar with ASD but for those who are not familiar. Sue Rubin attends college, she is a junior and she has 24 hour helpers even though she lives alone.

There are so many films out there narrated and/or produced by parents or loved ones of the individuals with autism, I believe that it makes so much more of an impact when the words come from the person with autism.

Sue carries around spoons for comfort and I think that it is interesting because that is what Griffin used to do when he was a little kiddo in fact called him the "spoon master" because he wouldn't go anywhere without at least two spoons in his hands.

Tuesday, April 01, 2008

Acceptance of Autism and Support of the Individual

I just love this picture of Griffin with his "pet" penguin all bundled up with a blanket, the cutest part was when he was hugging, snuggling, and kissing it with such care and affection. As time goes on I have found that Griffin becomes more and more affectionate and demonstrates a great deal of imagination and he has developed such a wonderful sense of humor. Griffin loves to tell jokes that he has made up, often times I do not understand what he is saying but of course I play along anyhow eagerly awaiting his burst of laughter that always comes with his "punch line".

Here is the link to the article below that I discovered in my e-mail inbox, I found it to be enlightening and insightful. I always enjoy and take note when I read articles about autism written by an adult with autism. This article is all about acceptance and support of the individual with autism, I hope that when you read this that you end up feeling like your loved one with autism has a great deal to contribute to his/her community in some form or another and gives your life richness and joy just by being himself/herself. I hope that this article is beneficial to you and your family in some small yet significant way.

Ari Ne'eman
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005

IACC Testimony:

Members of the Committee,

Thank you for this opportunity to give comment on the IACC’s important work. My name is Ari Ne’eman and I am here today in my capacity as the President of the Autistic Self Advocacy Network (ASAN), a volunteer non-profit organization run by and for adults and youth on the autism spectrum. ASAN works to promote the autistic culture movement and other opportunities for individuals on the autism spectrum to interact with each other as well as work to improve the representation of the autistic community in public policy deliberations about autism and disability affairs.

I would like to take this time to reiterate and elaborate upon the comments I made at the last IACC meeting, encouraging this committee to re-orient its research agenda in a fashion that will comply with the perspectives and goals of the community of individuals on the autism spectrum. The first step towards this is to follow up on the appointment of Stephen Shore and add additional autistic representatives to the IACC and its workgroups. The concept of “Nothing About Us, Without Us” is a long time pillar of the disability rights movement and it should be respected in autism policymaking, just as it would be with the drafting of policy aimed at any other minority group.

In addition, we encourage this committee to focus its research towards measures that will improve the opportunities for communication and quality of life for autistic individuals, by funding research into Augmentative and Assistive Communication (AAC) technology, early education and service-delivery methods in areas of employment, independent living, housing and other important spheres for autistic individuals everywhere. I’m concerned by the fact that the autistic people, family members and others who make up ASAN’s international membership continue to face skepticism about the very existence of autistic adults. The media portrays the autism spectrum as something new only existing amongst children. Yet, the adult population continues to lack needed support and awareness. State vocational rehabilitation agencies and other aspects of the developmental disability service-delivery infrastructure are ill-informed about the needs of adults on the spectrum. Furthermore, there is a pressing need for more research on how to best serve both adults and youth on the autism spectrum in fields like educational methodologies, restraint reduction, positive behavioral supports and other areas that take practical steps to improve access, inclusion and respect for our community.

I was diagnosed on the autism spectrum at age 12, and I have been fortunate enough to benefit from a family that has been accepting of my differences and supportive of the educational services that have helped me develop. Unfortunately, not all children on the spectrum are receiving that acceptance and support. The current culture of despair and intolerance promoted by groups like Autism Speaks and Generation Rescue does not contribute to positive outcomes for autistic individuals. Statements that devalue autistic life, like those made unapologetically in the fundraising video Autism Every Day by IACC member and Autism Speaks Executive Vice President Alison Tepper Singer, do not benefit people on the spectrum and contribute to an environment of stigma and fear. Ms. Singer’s comments, where she states she considered driving her daughter off the George Washington Bridge, refraining "only because of…the fact that I have another child," are of great concern, particularly given the murder of an autistic child by her mother a mere four days after her statement. The inaccurate and incomplete picture of the autism spectrum that Autism Speaks has chosen to promote for fundraising purposes contributes to the environment that makes these atrocities possible. That is why the autistic community continues to be concerned by Ms. Singer’s presence on this Committee and the message her selection sends to people on the spectrum, our families and our supporters. You cannot help us by demonizing our neurology and stigmatizing our very existence.

Genetic research promoting a prenatal test for the autism spectrum is also of grave concern. It should be noted that Dr. Joseph Buxbaum, an Autism Speaks-funded researcher, believes that a prenatal test for the autism spectrum could exist as early as 2015 – in fact, genetic testing for some types of the autism spectrum is already available. There is significant evidence that such tests will and are leading to the use of selective abortion to engage in eugenics against the developmentally disabled. It should be noted that approximately 90% of fetuses that test positive for Down Syndrome are aborted. While a prenatal test for the autism spectrum is significantly more complex to develop, once it is in existence the current climate of fear makes a similar result likely. While we do not hold an opinion on the abortion debate in general, we are deeply concerned by any effort to eliminate a particular kind of individual from the gene pool solely on the basis of neurology. Taxpayer funds should not be going to eugenics.

I consider it a grave human rights concern that many autistic individuals continue to be unable to communicate because the assistive communication technology and educational methodology research that could help many more adults and children convey their needs is being ignored in favor of eugenically oriented genetic research aimed at finding a “cure” for a natural and legitimate part of human genetic diversity. The autism spectrum is not a recent epidemic but a neurological condition that has always existed, but is only now being diagnosed at incidence rates that approach accuracy.
The autism spectrum often comes with significant disabilities that require substantial support. However, rather than trying to eliminate us, we can and should be taking steps to mitigate those disabilities while empowering the strengths that we possess and respecting our legitimate place in the spectrum of human diversity. We encourage this Committee to take the first steps towards shifting the main buzzword about autism from “cure” to “communication” and ultimately, to moving the dialogue about the autism spectrum to one of acceptance, inclusion and, above all, respect.

Thank you for your time. As always, “Nothing About Us, Without Us.”

Friday, March 28, 2008

HBO Movie Online

I was so inspired by this movie and greatly appreciated that it featured children from all over the spectrum and didn't focus on what they could not do but instead showed the gifts that each and every one had. I am sure that it took a great deal of hard work to put it all together but I found it to be reassuring and comforting to know that other parents go through the same intense emotions that I do and that we all share the same fears for our children's future.

If you do nothing else today please watch this film to the end and I feel certain that you will have a great big smile on your face and your heart will feel that much bigger and you may end up with a few tears in your eyes. I don't know how long HBO will make this film available online so watch it now and do not hesitate or put it off until another time, films like this simply do not come along often.

Griffin is feeling waaaaay better and has his happy camper smile and laughter going again and I am so very happy. For some reason he woke up at 2:00 a.m. and couldn't or wouldn't go back to sleep. I did my very best to stay awake but the medicine that I take for sleep made it exceptionally difficult to not doze off, I struggled to remain alert and to be aware of what was going on, Griffin always stays in the bedroom with me when he gets up like this and he is constantly attempting to rouse me and get me to wake up enough to carry on conversation with him. I finally got up for good at 5:00 and was able to get Griffin to snuggle with me and we watched the Sprout channel, he kept telling me jokes, and we ate some cereal together. Literally all day long Griffin showed no signs whatsoever of being fatigued and went to sleep tonight at about 8:30. We had a wonderful day even without going outside of the house, it was just a lazy day with lots of laughter and snuggling (which is my all time favorite thing to do with him). I am so very fortunate that he is affectionate and I hope that for us that never changes.

If it doesn't rain this weekend then I plan to take Griffin to the park or parking lot of his school so that he can ride his bike and get some much needed exercise........for both of us. Have a beautiful weekend and don't forget to watch the movie, in fact, watch it with your loved ones and send the link to everyone you know whether they understand autism or not they will get a glimpse into what you experience in your life both alone and with your child and even with your partner/spouse.

Tuesday, March 25, 2008

NO, NO, NO.........Not Strep AGAIN!

I just found out yesterday that Griffin has strep once again!! I didn't even know that he was sick because he never complained once about his throat or anything else hurting whatsoever. I was taking him to see the doctor because he has sleep apnea and he snores quite loudly seeming to not have quality sleep at all, also he has been having behavior issues at school which I now know is most likely because he was feeling so bad. Just to err on the side of caution, I asked for a referral to a ENT so that we can find out if he is having any problems with his adnoids/tonsils because he has been snoring for around a year or so and his sleep apnea is getting worse with time. It may be that he is going to school tired since he may not be getting quality sleep. Between Griffin having strep and also having ear problems I am beginning to think that if the doctor (ENT) recommends that he have his tonsils or adnoids out that it might be best because I hate for him to keep on taking antibiotics besides, it is nearly impossible to get him to take his meds because it is so challenging to get the medicine in food without him tasting it. Each time that he has gotten a bacterial infection he absolutely refused to take his medicine and he ended up having to get the Rosephin shots which is not a good thing because I don't want him to compromise his immune system and have drug resistant bacteria. I am and never have been a big fan of antibiotics in the first place but I truly doubt that I could get him to take the herbs that I take for infection.

Griffin has been talking a lot more at home but a good bit of it is difficult to understand and something really cool that he has been doing is that he loves to tell jokes that he has made up all on his own. Often he will start laughing before he gets out his punch line........he is so adorable. Lately I have noticed that Griffin is using words to describe how he feels and he is using the words appropriately to express himself which is quite significant for him. Even though he is having behavior issues at school he has been doing pretty well at home and out in public with only a few meltdowns per month.........what a great relief!

My sweet and loving little guy still wants a kitty because he misses our kitty that we had in Alaska "Pisgah" who now lives with my dear friend who still resides there. Almost daily he asks if we can go to the animal shelter to get a kitty and it breaks my heart to have to tell him that we cannot (because my dad won't allow it) but that maybe in the future we can do that. He is such an affectionate little guy and I count my blessings each and everyday.

Have a great day everyone!

Wednesday, March 12, 2008

OMG, I Had Such An Awesome Time But.........

Just a quick entry to let everyone know that I had an awesome time in Seattle with my very special friends but at the same time I am absolutely elated that I am back home with my special little guy who I missed tremendously.

Everything is going well although Griffin said his ear is popping and I just hope that it doesn't mean that he is about to have another ear infection. He was exceptionally mellow yesterday during speech and OT and also this morning so I am concerned that he is not feeling well.

I haven't transferred the pics from my trip yet but as soon as I do I will post them so you can see a bit of what we did and see how much fun we were having.

I will write again soon, I hope that you all are doing well and having a great day!

Sunday, February 24, 2008

Off To See Queensryche Live In Concert!!!!!!!!

I am so excited about going to see my dear friends and going to see Queensryche in concert and the brunch that we are attending the day of the concert where we get to see the band and schmooze with them for a few hours getting pictures and autographs too. I am going to attempt to talk to Geoff Tate the lead singer, about considering doing a concert or some kind of charity event for autism. I am going to the brunch prepared with a few relevant facts so that I can say a lot in a short period of time. Wish me luck on that one.

I will be traveling all across the country, about 3000.00 miles just to get to where I am going no matter how long the flight it will NOT be nearly as bad as the trip from Alaska was. I am going to miss my precious little guy, life will NOT be as wonderful and filled with his smiles and laughter each day.................don't know how I will handle it myself but I am trying to be positive about it all. I will surely miss his infectious laugh and contagious smile each day but for me to do this is a really big thing since it is for my pleasure and I do feel guilty for leaving him. This is the only time that I have taken a trip all on my own without it being "necessary" such as the trip to Alaska for the trial. Mom and dad have both given me their blessings for going and let me know that they are both doing perfectly fine.........healthwise, and that it will not be a problem for either of them. I would not even consider going if not for their blessings and reassurance that all is well with them and that Griffin will be cared for with no difficulties. Mom is a very strong woman who loves Griffin dearly and she does far better with him during meltdowns and she can talk him out of any given situation and get him to listen to her every time. It is that "Nana" magic I guess.

If mom or dad feels that I need to come back they have let me know in no uncertain terms that they will call me immediately to let me know that I need to come home. They both are confident that that will not be the case at all so I will leave with the trust and respect of their judgment and sound decisions as adults with sound minds to make such choices for themselves and for Griffin.

Love you guys, you know who you special friends. Hugs to you and yours!!!!!!!!!!!!!!

Please keep me in your thoughts and send lots of positive vibes my way so that I can fully enjoy my trip. I could sure use your support in this matter. Also keep Griffin, mom, and dad in your thoughts and send them positive vibes too...............especially Griffin because this change may well effect him and cause him to have meltdowns and I certainly do not want him to feel lost without me. I will be calling him several times a day to let him know how long I will be gone, mom can help him to mark off the days on the calender, and let him know how much I love him.

Please feel free to leave your comments, questions, and advice concerning this trip but I am leaving on the 26th so I need to hear from you right away. Thanks for all of you who are so near and dear to my heart, those of you who have mine and Griffin's best interest in mind and who also have us in your heart. Hugs to my special friends from both of us.

Monday, February 18, 2008

It's a Beautiful Day

I tried several times to upload an image to this entry but for some reason it is not working properly, this is the first time that it has ever happened so I don't know how to fix it.

Griffin is doing great and getting back into his usual routine, there's been no whining and he has learned to be nice and use his manners in order to get what he wants. I am so happy that it seems to be wearing off and he is improving how he copes with uncomfortable situations. I am still going to make an appointment with the child behavior expert for future reference so if it or some other behavior rears its ugly head then I will be prepared and have the tools that I need to deal with it.

Griffin is doing what he did in Anchorage during the winter, he is wanting to stay inside all day and it is still difficult to get him out of the house to go play, to go shopping, or just to go for a walk. It is very isolating and it concerns me that he is not motivated to do something different. I must confess that I have been guilty of isolating myself especially during the wintertime in Alaska due to weather conditions and the degree of difficulty in dealing with how much trouble it was to get dressed and clean off the car and ultimately dealing with driving in dangerous conditions. Since being in the south I have not isolated myself and I usually make great effort to get Griffin active and at least going for a ride in the car for awhile, I love driving my Volvo and it is so nice to get out of the house for awhile.

Today and for the past few days, the weather is sunny and warm (in the 60's) and it is just perfect for going to the playground so that is my goal for the go run, swing, and play and maybe feeding the ducks and geese.

I have been taking a new medicine for Fibromyalgia and it has helped me to have much more energy but I still have quite a bit of pain, can't remember if I have mentioned that or not so sorry if I am repeating myself. I will ask my doctor if we can increase the dosage a bit to see if it helps me more.

Have a wonderful day!

Saturday, February 16, 2008

Whining and Not Being a Good Listener

Griffin is having a hard time today and I cannot get him out of the house to go out to play. I have been getting frustrated with him because he is being so whiny and it is driving me nuts! So he isn't just throwing tantrums but also putting on the tears and yelling at me and giving me orders. I have tried every approach that I know and nothing is working. I have tried the time out approach, being firm and taking away his toys and computer time, being gentle and explaining things to him and giving him a time limit before it is time to go and NONE of these worked. I am at my wits end and sure could use some support, some suggestions at this point in time.

I have even offered to take him to one of his favorite stores just to look around and he said yes once but after that it didn't interest him at all. Please help with any suggestions you might have. I am so very eager to speak to the child behavior expert soon so that I can learn some techniques other than what I have tried.

I woke up at 3:00, 5:00, and at 6:00 this morning and I cannot figure out why I keep waking up. There are times when I get up and eat or do something and when I wake in the morning I find things open or moved that I do not remember doing at all! I once woke up and left the water running in the sink.....thank goodness the drain was open so it didn't get all over the floor. My therapist tells me that it is quite common amongst PTSD survivors to not be aware of what they are doing in the middle of the night, she told me that it has to do with the disassociation that the survivors experience during waking and sleeping hours. All I know is that I have got to stop eating late into the night or I am going to have to buy a whole bunch of new pants.

Ta ta for now, don't forget to laugh whenever the opportunity presents itself!

Friday, February 15, 2008

I Almost Lost My Child Today

I have never been so scared as I was today during Griffin's swimming session, I actually saw my child struggling for his life after he wandered from his OT and ended up in the deep water. I was terrified as I watched his head go under the water as he desperately tried to keep it up. His OT was searching for some toys to play with at the edge of the pool and had instructed Griffin to stay by her side but instead he walked to the deep water without her noticing and I didn't see him until it was nearly too late for him. I stood up and went to the edge of the pool while the OT was trying to visually locate him but she couldn't see him because his head was underwater. I got her attention and pointed to where he was and she immediately went to rescue him. What really pisses me off is that the lifeguard did nothing even though he was right there in front of her. I later complained to the CEO of the YMCA and he said that he would look into the matter.

After we had gotten home I received a call from the supervisor of aquatics and she told me that the lifeguard had done nothing wrong and that she was watching Griffin as he was submerged and struggling for his life of course she didn't admit that the lifeguard could have gone into the pool after him as soon as she saw him go underwater. I almost dove into the water myself as it seemed to me that nobody was doing anything to help him. The supervisor had said that the lifeguard knew that the OT had been helping Griffin work on going underwater so she didn't panic.............What the hell? I responded by reminding them that Griffin was working on that WITH his OT present and not by himself..............Boy did that ever piss me off!!!!!!!!!!! I reminded them that he is only 6 years old and not able to swim on his own and that was the very reason for him to have an OT in the first frickin place!!!!!!!!!!!

One of the reasons that it is so scary for me is that Griffin has no fear of anything and that is the very reason that he wandered off into the deep water and still after the incident he was laughing and smiling through the whole thing. I do not believe that he learned anything from it at all. I most certainly did, that is for sure!!!!!! I will be watching him like a hawk from now on. I know that his OT was scared as well and that it will not happen again. I just wish that the lifeguard and her supervisor had been more responsible and admitted that there could have been something done to help him, I no longer trust them to dive in and help him so I guess that I will have only myself to do something about helping him.

It reminds me of how well I have to watch him around cars because he simply has no fear of traffic and all the dangers of being around cars in parking lots and otherwise. This is why I have a handicapped placard in our car so that I can park close to the stores with less chances of spending much time around the vehicles and less chance of him running off and getting away from me. If your child is a runner then I highly recommend that you get a placard because it does help to manage how much your child exposed to vehicles and it simply just makes more sense.

I went to Griffin's Valentine's party at school and I enjoyed walking around and taking pictures of the children as they sat and ate their goodies and talked to me. Griffin was so happy to see me and he kept acknowledging me and giving me hugs and kisses. I have some pictures that I took that I want to put on the blog but it is getting very late and I must go to bed. There are some great pictures of Griffin that I would love for you to see but it is just going to have to wait until later. Come back soon to visit so that you can see the awesome pictures that I will have posted.