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 agree and I think that he is going to do just wonderfully and love it. 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 did hear someone mention that they are getting a male assistant or something in their classroom (special needs class) and that worries me tremendously and for good reason. Due to my history I am very leery of men being around children and no matter how "nice" he is I will not trust him to be around Griffin, especially not being alone with him. I plan to make my concerns known and will insist that there are safeguards in place to prevent anything from ever happening to him. The state that I live in is infamous for sexual predators who prey upon children, especially in the school system so it is NOT something that I take lightly.

All in all we are doing very well and I hope the same is true for you too. Have a wonderful day!

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 summer......at 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.

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.

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:
http://autismschmatism.blogspot.com/
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.

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!

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.

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!

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.

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
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

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.”

HBO Movie Online

http://www.hbo.com/docs/programs/autism/video/

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.

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!

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!

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 are.....my 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.

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 day...............to 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!

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!

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.

Griffin's Behavior

Griffin came home with a report from his teacher that he was being rude to his peers and stomping and whining all day. I believe that he is still upset about the changes in his routine and because mom and dad are not at home still. I am trying to find a child psychologist or behavior expert so that we can nip this in the bud.

My dad may be home today which would be great so that Griffin can get back into his usual routine and he won't be missing his Nana anymore. He has been having a really hard time with transitions and has a meltdown when we are going anywhere other than home, he even has meltdowns when we go to his favorite places to eat such as McDonald's or Wendy's. I have been trying to help him by explaining things to him but it was all in vain.

Griffin has been really bossy at home and demanding so I am constantly reminding him of his manners and trying to help him ask for what he wants rather than him telling me what to do. It is strange for me now to not have help from my mom in dealing with his undesirable behaviors, it's as if we were back in Anchorage again. It is a reminder for me that I appreciate all the help that I have been getting from my mom since we have lived here. Griffin is too big now to manage so it is only possible to talk to him and it is not possible to pick him up off the floor as he is having a meltdown anymore so I must use my noggin more than ever before in helping him to manage and regulate himself in any given situation.

Time to go to the hospital and see what's going on with my dad, I sure do hope that he gets to come home today for several reasons but it will be nice for mom to be home too because it will really help Griffin regulate his life/actions/and words.

Since I last wrote Griffin has improved significantly and was actually able to go to swimming on the 7th and did an awesome job at being a good listener. He put his face underwater and didn't come up coughing so that was a new milepost for him as far as swimming goes. He had to get 2 shots of Rosephen and was a brave little trooper, he had no fear when we pulled up to the doctor's office because he was focused on watching the local PBS TV station (ETV) and he didn't start to cry until we had to hold him down to get his injection. Soon after the shot he had stopped crying and went on with other things and seemed fine. That is until we got to the school, he became very upset and had a meltdown, his teacher had to come outside the school and get Griffin to go inside............and he did without crying or struggling. I believe that a lot of the reasons for him having meltdowns lately is because he is not in his regular routine and because he wasn't feeling well, he has made a great improvement and has coped with the changes exceptionally well considering all the circumstances.

My dad is doing way better than before, he is eating solid foods, moving around a bit, and speaking much more clearly. I am trying out a new medication (Lyrica) for my fibromyalgia and so far it seems to be helping a lot with the fatigue and with the pain I have all over my body.

I am trying to help Griffin find some semblance of order and routine in his day(s) by letting him stay home for quite awhile so that he can enjoy his down time activities. I will take him to the playground/park to play for awhile since it is so warm and sunny outside even though he is complacent with staying inside right now. I have been cleaning all day and he has been really laid back and happy with what's going on now, I will have to use the McDonald's card in order to get him out of the house because all the other suggestions are not working with him right now.

Hope that you all are well and having a great weekend. Thanks for stopping by to find out what's going on with us, feel free to leave me a comment to let me know that you care for us, it makes me happy to see comments in my inbox.............something to look forward to each day.

Things Are Going Much Better Today

I only have a little while to let you know what's going on with everyone. They took the tube out and my dad is breathing on his own and he still has a great deal of infection and is trying to cough it up, his breathing is labored but at least he is doing it on his own. While I was there today he did open his eyes a few times but it seemed that he wasn't able to focus on our faces, he was just staring out into space. They also took him off of most of the pain meds which I do not understand because he has peripheral neuropathy and as a result has excruciating pain in his feet all the time.

We got a portable cd player and put earphones on him playing his favorite cd's and I am not sure if he enjoys it or not but perhaps he does, it's worth a try. Griffin is doing better today because he went to the doctor yesterday and got a shot of Rosephen and needs to take 5 more days of oral antibiotics because after all this time he still has infection in his ears and congestion in his chest. I let him sleep in this morning because he really needed to rest to help his body heal. He got an award today at school for most improved in science and social studies!!!!! We are all so very proud of him.

I need to go so I can get him to speech and OT so I will try to write again tonight to let you all know how my dad is doing and what's going on with Griffin and me.

A Really Rough Weekend

I am so totally exhausted and so is Griffin because we spent the whole weekend at the hospital where my dad is in CCU (cardiac care unit) he has staph in his whole body but worse in his kidneys, lungs, and his heart. They have rendered him unconscious and intubated him because he wasn't breathing on his own for a couple of days but apparently he is doing better today so they may take the tube out and see if he can breathe on his own.

Griffin has not handled the major changes in the past few days for several reasons but primarily because he is still quite sick and his tolerance is very low. I called the doctor on call but they told me to wait until tomorrow to bring him in to his regular doctor, I didn't agree but who else am I to call? Even though we were there at the hospital I didn't feel like making him sit in the waiting room in the ER to see a doctor and be exposed to even more sickness and germs.

I asked the nurse about exposure to the staph but she didn't give me much information so I am going to strongly encourage Griffin's doctor to draw some blood and make sure that he doesn't have it as well. My dad has been very sick for weeks because he refused to go to the doctor and in that time I do not remember what kind of close contact they have had so I am very concerned. My mom is still very sick and has been for a couple of weeks so I am worried about her too, she has been coughing up blood but will not leave my father's side. I understand why she won't leave my dad because if it were my child I would be the same way that my mom is with my dad. They have been together 45 years and that is quite the strong bond. My mom is a very nurturing mother and wife, she loves to bake treats for the people in her everyday life such as the staff at the pharmacy or her doctor and others who help her in sometimes just small ways. They say that people forget what you say and how you act but what leaves the most lasting impression is how you made them feel and mom makes people feel warm and fuzzy because she is such a giving person. I just hope that my dad gets come home soon so that we all can rest easy and get some semblance of order back in our lives. My dad and I are really close and I am having a hard time processing all this.

Tonight, I had to buy a brand new DVD player for Griffin because his old one broke and boy did that ever set off a meltdown. He loves that thing so much and it is a big part of his free time activities so it is worth the cost. I can return the old one because I got an extended warranty with it.

I am so glad that we are at home where it is nice and quiet and will get to sleep in our own beds. Griffin really missed my mom tonight at bed time because she usually snuggles with him too, he told her over the phone that he missed her and loved her and that she needs to come to the bed to snuggle with him. He didn't understand that she was not going to be here even though I explained it to him. We will be so glad when they are back home.

I will keep you updated, got to get Griffin to bed where we will snuggle and zonk out!

HAPPY BIRTHDAY MY BEAUTIFUL CHILD GRIFFIN!

I took Griffin to school this morning and on the way there he kept asking me to stay home and wrap presents, I felt kind of bad for him although I believe that being at school is the best outlet for him because he has been so bored at home. By the time we actually got into the school and walked to his classroom he was fine and had a great big smile on his face.

I will write again later and add some new pics for his birthday to let you know how it went and if he goes to swimming or not. For the record and for future reference I want Griffin to know that this is and has been for 6 years the most wonderful day of my entire life, the day he was born. Thank you Griffin for being in my life and making it rich and so full of joy. Thank you for teaching me something new each day and for bringing laughter into my life like nothing else has ever done for me. You are and always will be my most favorite guy in the whole universe! I love you, my little "Pumpkin Pie".

Griffin Is Still Sick But Doing Much Better Today

Here is a picture of my little happy camper before he got really really sick. I took Griffin to the doctor last Friday and found out that he had a double ear infection along with a terrible cough and a runny nose. The doctor prescribed antibiotics (Omnicef) which I have had to open up the capsule and try to hide it in some food (ice cream & chocolate syrup) once a day and today he is finally starting to feel better. The reason that I didn't take him to the doctor sooner is because he didn't complain until the pain got so severe that he apparently couldn't stand it anymore. Griffin has such a high tolerance to pain he won't let me know until he is just miserable. For several days he didn't even want to leave the house which is highly unusual for him but he did get some much needed rest to help him heal faster. Finally yesterday he asked to go to McDonalds for a Happy Meal and with lots of encouragement he did finish most of his food. I was just glad that he was feeling well enough to leave the house.

I picked up some homework from his teacher yesterday and when I showed Griffin he was happy about it, he loves to do homework. This morning his nose isn't running and he is not coughing nearly as much as yesterday and his eye is doing better, I had thought that he had pink eye yesterday morning and got some drops for it but today he didn't wake up with a crusty eye so maybe it wasn't pink eye or the one application of drops made a difference. The doctor told me that after the first application of drops (24 hours later) he will be able to be exposed to others and not be contagious anymore.

Tomorrow is Griffin's big 6th birthday! I had wanted to arrange a party for him but since he and my mom are both sick I guess that his birthday celebration will be postponed until a later date. I will be so happy if he is even better tomorrow so that he can go to school and go swimming tomorrow afternoon. Griffin seems to grasp the concept of what his birthday means and that he will get presents and that he will be 6 years old so that is cool. I bought cake mix, sprinkles, and candy letters so that he can decorate his own cake either this afternoon or tomorrow, I will take some pictures of his masterpiece (baking and decorating project).

I just remembered that Griffin was supposed to have his evaluation at school to determine where he really is academically and otherwise behaviorally and socially but he has missed it since he cannot attend school right now. I guess that I will call and re-schedule it. even though he has missed school, he has maintained a mellow and affectionate disposition and has done well not to over exert himself which is great because to me that means that he is aware that his body needs rest and mellow/low key activities.

I will update the blog tomorrow and let you know how well Griffin is doing and whether or not he gets to go to school and to swimming. Hope that everyone has a wonderful day!

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Hopkins Team Identifies Autism Susceptibility Gene

WEBWIRE – Wednesday, January 23, 2008

Researchers at Johns Hopkins have identified a common genetic alteration that appears to be associated with autism only when inherited by sons from their mother. The CNTNAP2 gene, also identified by two other groups publishing jointly in the January issue of The American Journal of Human Genetics, is one of the strongest common genetic links to autism susceptibility found to date.

“While there probably are other, yet unidentified gene variants that also contribute to autism susceptibility, our data clearly show that CNTNAP2 is associated with an increased risk and an excellent entry into further study for understanding autism,” says Aravinda Chakravarti, Ph.D., professor of medicine, pediatrics and molecular biology and genetics and member of the McKusick-Nathans Institute of Genetic Medicine at Hopkins.

Using samples collected by the National Institute of Mental Health Autism Genetics Initiative, the Hopkins team analyzed genetic material from 72 families, each having two or three affected children who were diagnosed before 36 months of age by the most stringent clinical classification of autism disorder.

“We initially limited ourselves to the samples with the strictest definition of autism to minimize any heterogeneity, hoping that if the effects were subtle, they would still stand out,” says Dan Arking, Ph.D., an assistant professor at the McKusick-Nathans Institute. “Using a broader definition of autism, we were then able to replicate the initial finding in one of the largest-ever group of autism samples.”

Autism spectrum disorder includes a set of poorly understood developmental disorders that vary in severity and symptoms, but all include impaired social interaction and language development and restricted and repetitive behavior and interests.

The Hopkins team focused on one region on chromosome 7 that previously had been flagged as a possible link to faulty language acquisition in autism families.

Using genome-wide analysis, the team first analyzed DNA from 292 individuals, including 148 affected offspring. They compared single nucleotide polymorphisms, or SNPs, the differences in single chemical’s building blocks of the DNA at the same point across many people. They found that autistic individuals tend to inherit the DNA letter T from their parents much more often than expected by chance at one particular place on the chromosome.

To validate their finding, the team then repeated their approach with a separate group of samples consisting of 1,295 parent-child trios. They again found an overrepresentation of T, confirming that inheritance of the T genetic variant is associated with increased risk of developing autism.

The T genetic variant is found in the middle of the CNTNAP2 gene, short for contactin-associated protein-like 2, which codes for a protein that’s thought to mediate cell communication in the nervous system.

The researchers then looked at the same data to see if there were differences in which parent the T allele is inherited from and the gender of the child. They found that autistic individuals are more likely to get the T allele from mothers than fathers, and more likely to be boys than girls.

“We know that boys are four times as likely as girls to be autistic,” says Chakravarti. “And now we have some intriguing evidence suggesting that the gene may show a parent-of-origin effect.”

The research was funded by the National Institutes of Health.

Authors on the paper are Dan Arking, David Cutler, Tanya Teslovich, Kristen West, Morna Ikeda, Alexis Rea, Moltu Guy, Shin Lin and Chakravarti of Hopkins, and Camille Brune and Edwin Cook Jr. of the Institute for Juvenile Research at the University of Illinois, Chicago.

On the Web:

http://www.hopkinsmedicine.org/geneticmedicine/About/index.html

http://www.ajhg.org/