A Definition I Really Liked

July 22, 2008

The University of Arizona and Chapel Haven came out with a new program for graduate of High School looking for higher learning who are also on the Autism spectrum. It looks like it is going to be am amazing program and I hope it still exists when we begin to look for such a program for Little Miss Sunshine. It appears as though it strives for a students learning and their own independence as well.

The article which explains some of the program, did however have a great definition of Autism that i want to remember so I am keeping it here for safe keeping.

“Autism is a brain disorder affecting a person’s ability to communicate, reason and interact with others. People with autism are socially awkward and miss obvious social cues.”

In a time like today where the number 3 conservative radio talk show host thinks that Autism is a bunch of fakes and we are full of it, we need to pull together as family and close friends. Ignore morons and idiots who do not live day to day with these precious little angels and pull out quotes and saying that make us say, “YES!, that makes more sense to me!!”

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Graduation

June 12, 2008

Okay, so it really isn’t a graduation, per se, but, Miss Sunshine graduated from Pre-school yesterday!! What an amazing accomplishment, for us anyway.

It has been such a topsy turvy year for us with Miss Sunshine and to end it with such an amazing end, I was just shedding tears of joy. She actually did all of the class songs at their ceremony with a little bit of extra guidance from the teacher.

For those that don’t know, Miss Sunshine was diagnosed with PDD-NOS (it is an Autism Spectrum disorder) back in November and it had been a Roller Coaster ride for us ever since. We are still on it, especially with not knowing where our school district is going to place her for kindergarten this fall. They are still attempting to test her even though her last day of school was officially today.

She is an amazing little girl who tries to hold it all together for precious moments like her graduation and to steal a few words from one of her graduation songs, she truly was a “Superstar” yesterday!

Psychological Second Opinion

May 19, 2008

We went to Indian Creek Foundation for Miss Sunshine’s first evaluation for Wraparound sevices. When we finally get around to the psycologist he was more concerned with Miss Sunshine climbing on the furniture, the window sill and her taking off her clothes which all happen to be huge issues of hers that actually contuncting an evaluation. I should have gone with my gut instict and let her do what she wanted or ended the interview right then and there but, I didn’t.

The psycologist ended up giving Miss Sunshine 4 hours of BSC and only 6 hours of TSS. Oh and Indian Creek, after all of this that took 4 months and several calls to them and Megellian, could not provide the services. Took another month and a half to find a provider. As soon as the Behavior Consultant took one look at Miss Sunshine, he said they gave her how many hours of TSS? Is the psycologist kidding you? He read the report 3 times in disbelief and came to see me and said to me I need another opinion or just have another psycologist read the report the first one wrote because it was ridiculous that he only gave 6 hours of TSS. She needed a lot more hours just from the report if not from just watching her for half an hour.

The second opinion psycologist decided to double Miss Sunshine’s TSS hours to 12 hours and the only reason she didn’t want to say full time is because she wants Miss Sunshine to have some kind of Autism inclusion class and also to be in a regular class with a shadow as well. I guess I am okay with that.

I get so much anxiety before going to these appointments and get so depressed afterwards. Beforehand the entire gambit of things goes through my mind. Miss Sunshine really isn’t on the spectrum (every parent’s dream), well then why does she exhibit these behaviours? Or she is much worse than we originally led you to believe and we think she needs to go to a speciality school. Afterwards and they tell you their thoughts, which are different than the previous psychologist and different than the developmental pediatrician even, you have mixed feelings and feel a bit depressed. I even feel a bit guilty.

I went back to work on a more full time basis and I don’t get to be around Miss Sunshine as often any more. Now that I have stepped away from her this past month, I have seen a bit of what others have seen in her. I now see more of her stims, her mumbles and non-verbal communications, her repeating, her movements, her speed and still see her amazingness and see my little girl.

The school district has just begun their evaluation of her. Makes me a tad nervous for her and I hope I don’t yet again have to fight for what she needs. It seems an endless battle. I am still battling with the IU for services, mind you.

I hope this new evaluation will come into play soon and Miss Sunshine can get the services she so desperately needs this spring and summer before school starts. When she does get services, she does thrive and they do benefit her.

Statement Of Senator Hillary Rodham Clinton On World Autism Awareness Day

April 4, 2008

April 2, 2008 

I am pleased to join the United Nations in recognizing the inaugural World Autism Awareness Day. Today offers us the opportunity to reaffirm a commitment to addressing the need for increased treatment, services, and research into autism spectrum disorders.

In the United States and other countries, we have seen a rise in the number of individuals diagnosed with autism. Throughout my time in public service, I have met with families who have shared their experiences in dealing with autism, and trying to seek the best possible care for their loved ones with the disorder. Currently, the Centers for Disease Control and Prevention estimates that 1 in 150 children in the United States has an autism spectrum disorder. In order to respond to these increases, we need to have a commensurate investment in services and programs for individuals with autism and other developmental disabilities. I also believe that we should increase our efforts to research autism, so that we better understand the causes and the best treatments for this condition.

In November, I announced a comprehensive plan to address autism. My plan provides nearly $1 billion over five years for autism research, surveillance, awareness, and early identification. I will create an Autism Task Force charged with investigating evidence-based treatments, interventions, and services. We need to know what works and start investing in those efforts. I will also expand access to post-diagnosis care so that once children have been identified as autistic, they receive appropriate evidence-based treatment immediately. No child should experience a delay in receiving services that can improve his or her quality of life. But too often today, children are forced to wait for months for care. I’ll also provide funding to school districts and universities to train teachers and other health and social services professionals in how to work most effectively with autistic children, since the number of children with autism in our public schools has skyrocketed in recent years. I’ll make sure every young person has a transition plan before they leave high school. I will also ensure that both children and adults with autism have access to the services they need – including housing, transportation, employment – to live rich and full lives. In all, I will commit $500 million annually to provide services to improve the quality of life for all people living with autism.

This plan builds on my work in the Senate to help individuals and families impacted by autism. Last year, I introduced the Expanding the Promise for Individuals with Autism Act, which would increase the availability of effective treatment, services and interventions for both children and adults living with autism. I was also a cosponsor of the Combating Autism Act, and have worked to secure funding for the research programs authorized by that act.

I hope that today’s commemoration will once again allow us to highlight the needs of children, adults, and families impacted by autism, and I look forward to working to continue to raise awareness about autism spectrum disorders.

April is Autism Awareness Month!!

April 1, 2008

 

Philadelphia has a lot of activities going for Autism Awareness Month. A 76ers game this weekend. A Phillies game on April 19th. A day at the zoo. All in the name of Autism awareness.

The Princess and I will be walking on September 20th for the Walk Now for Autism and you can join our team online through our webpage at www.walknowforautism.org/. Donations can also be mailed to Autism Speaks using the donation form located on our page.

Our team name is Little Miss Sunshine, named for our own Little Miss Sunshine of course. I can’t believe that it is just about 6 months ago that she was diagnosed. She has made great strides with her therapy. She still has a very long way to go but, we are all so very proud of her.

Please join us in our fight against autism. Thank you for making a difference in the lives of the more than 1 million Americans living with autism today. Follow this link to visit the team page for Little Miss Sunshine. Follow this link to visit My page. Thank you for just even looking.

Help get the word out about Autism and make a difference today!!

Getting Connected With The School District

April 1, 2008

I registered Miss Sunshine for Kindergarten March 17th. Our district has a central registration office and even though the schools were on vacation, they were registering kids all week. I went with all the proper stuff including her IEP from the county IU and psychological evaluation. That was a Monday. On Wednesday, the elementary school Psychologist calls me to tell me she had Miss Sunshine’s paper work and she would be sending me a packet of information for me to fill out. It arrived Friday. The packet was HUGE and took me a week to fill out everything. The school Psychologist called me today to tell me she received everything and thanked me for getting everything to her so quickly. She also said that any other reports I might have on Miss Sunshine would be very helpful. Anything from the Developmental Pediatrician or anyone else. I definitely more than happy to sent them too her if it will help her evaluate Miss Sunshine better.

I also asked, since I keep getting road blocks at the IU, if they would do a functional behavior analysis on Miss Sunshine. The School Psychologist was more than happy to oblige.

I can use the Princess as a courier to transport documents back and forth since she goes to that elementary school right now and it will go a bit faster as well. For right now, it sounds like the School Psychologist is working with us, not against us which will help make this transition smoother. It also helps that we are willing to give the School Psychologist as much information as we have as possible.

This process does take a lot out of you and filling out those forms does seem very repetitive but in the need, if Miss Sunshine gets what she needs, the entire process will be well worth it.

Autism the Musical

March 27, 2008

Autism: the Musical
A heartwarming documentary about five kids with autism who write, rehearse, and perform a full-length production over six months’ time.

Watch online thru Sun. Check HBO for other showtimes.

Classical Music

March 26, 2008

When I was younger, my Mom always took my siblings and me to classical music concerts and always played classical music records at home. Out of the three of us, at the time, I was the one who truly took on a love for many of the pieces. Although to this day I can never remember which is which. Still terrible with names.

She wanted us to have an appreciation for the arts. We didn’t find out till much later what it really was helping us with until all the studies came out.

When I was pregnant with both the Princess and Miss Sunshine, I played a lot of classical music. It soothed me and the baby inside. I played a lot of Bach, Mozart, Tchaikovsky (I love the 1812 overture and all the ballets) but especially Vivaldi’s Four Seasons. There were studies about it making the baby smarter, etc. I didn’t care, it was comfort and it seemed to calm the baby specifically when I was pregnant the second time which was Miss Sunshine.

When Miss Sunshine was an infant and extremely fussy in the car (we didn’t know she was exhibiting signs yet), I would put on Vivaldi’s Four Seasons and some how it would make some kind of a difference for her. She would hate the car less.

Since getting all of her diagnoses, she gets a bunch of OT, speech, Itinerant teacher, supposed to get behavior therapy (still working on it) but she still had her “off” times and she still HATES the car. I had not tried classical music in a long time. I figured with all we have been through, why not.

She usually tells me too loud! Turn off! hurt my ears! However, I figured on the way to school I would try it. We have one classical music station and thankfully they were playing something soft and mellow. We listened to the piece all the way to school. She sat in her chair without a fuss (amazing!) no high pitched screaming (amazing!) At first I thought perhaps she went catatonic on me for a couple of moments, which she is know to do but I touched her and she said “Yes, Mommy?” It was incredible!

We have done this several times since and sometimes we don’t have as pleasurable a ride. Sometimes she tells me to turn off the music her ears hurt as she is covering her ears and sometimes she is up to her old tricks of getting out of her seat.

However, a lot of the time Miss Sunshine not only sits in her seat but she talks to me. Not the greatest of conversations (the are usually about Burger King, Wendy’s or Webkinz) but she is saying something close to full sentences. Is it about Mozart and Bach? Perhaps classical music has another amazing use. Well, for Miss Sunshine anyway. 

Sometimes Other’s Just Don’t Understand

March 18, 2008

You really learn who your friends are when they discover you have a child with Austim.

You go out shopping, to restaurants or to playgrounds and people just look at you funny like you have no idea how to manage your own child. They give you nasty looks, or make comments or even have the nastiness to say something to you or to your child to correct her think that will actually do something and when it doesn’t it must be that you never discipline because this child obviously misbehaved due to poor parenting.

You try to volunteer at your church/synagogue, child’s school, join in on committees or gift exchanges but because of your child’s crazy schedule or weird sleep habits, odd behavior at home like destroying an entire room, you can’t seem to manage to get organized enough to get out of the house let alone to a meeting on time or mail off a package on time that people start to think of you as a flake or seriously irresponsible. They start to give you strange looks when you walk by them at church or send you “please don’t bother joining” notes either through the mail or email your “kind” of help isn’t needed.

Then there are those friends of yours who just cannot comprehend what it is you go through because they have the “perfect” children. The child who you tell to go to bed at 8 PM, wake up at 7 AM, make your bed, sit at the table, dress yourself, pick up your toys, share your stuff, recite your ABC’s and 1 2 3’s and they can do it all with no questions asked. They are the kids who are wonderful and lovely and their parents have absolutely no worries about them and have no clue why Miss Sunshine acts the way she does and don’t really want their kids playing with her afraid her Autism might rub off on them.

I then have two categories of rare friends. The first are those who really and truly want to still be a part of our lives but aren’t sure what we are going through nor do they know how to act. The second unconditionally want to be a part of Miss Sunshine and my life. I treasure both of these minimal sets of friends. They are rare and far between and if you find either kind I suggest you grab them and hold on to them.

One Step Forward, A Million Back

March 18, 2008

In the past few weeks Miss Sunshine has been actually talking and making sense!! I have been so excited!!! When we go for the private OT (the IU STILL has not found us an OT for her IEP in school or out, but that is another story) and I sit in the waiting room chatting with the other moms which is such great therapy for me, btw, we all swap what is working for us and what is not. They all ask what we have been doing. Miss Sunshine is definitely a bit different than she was when we began way back in November and the other Moms in our little “group” are beginning to notice the change too.

She gets private, insurance paid for OT twice a week, a group music class once a week paid for out of pocket (thanks Mom and Dad for the class!!), IU speech which were aren’t exactly 100% happy with but it will do twice a week and private speech once a week with a speech therapist Miss Sunshine just LOVES!

We haven’t done any behavior modification yet, of course, because the IU sent us through Magellan and even though her initial assessment is complete, go figure (HAHA) they can’t find a provider quite yet.

I am actually a bit surprised with all of the behavior stuff, quite honestly, because with all of her waking up and stimming in the middle of the night and her serious sensory issues, the psychologist didn’t recommend or do a functional behavior analysis.

 We also modified Miss Sunshine’s diet a bit. Not the GF/CF diet but dairy free (her older sister is allergic anyway) and more whole, natural foods. Not sure if that has made a difference but all in all her what we call “off” days have been less.

However, when I spoke to her teacher, she tells me that she hasn’t noticed as much improvement as I have at home. That is a problem. Come the fall we want to be able to have her been in a regular kindergarten class with assistance and all her therapies (OT, speech, behavior…) We have about 5 months and if the IU and Magellan don’t get a move on, I am not sure how that is going to happen.