Single Moms Raising Autistic Sons

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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.”