Friday, September 16, 2011

A New School Year!

So it has been several months since any of us Superheroes have posted....probably because summer kept us all extremely busy. But now it's September and all of our kids are back at school and we might have the opportunity to spend an hour writing a blog entry.
This school year is bringing many changes for my son; mainstream all day is one. He has left his center based class of 7 to 8 students and has embarked on the journey of inclusion. He is in a class with 25 kids, a teacher, and his aide. The noise level has changed, the work load has increased, the pace of the classroom is much quicker, and he has to become familiar with all of these new people in his life. So far we are off to a rough start. Not only is he working with persons' unfamiliar to him, but he is in an environment that is both visually and auditorily chaotic. It has been hard for him to process what is happening around him, and he therefore screams and acts out. It's hard for him to follow his rules when he isn't sure that the people he is working with are in control of the situation. He wants to know who is in control and will be able to guide him through the day, by using techniques and behavior models that are familiar to him. So far this is not happening and he is suffering the consequences. I have to hold him to the standards that I always have for acting out at school, but this time around I feel like some of the behaviors could be easily avoided.
So far I have anxiety every morning dropping him off because I know he wants to do well, but making that happen and ignoring his impulses is really hard. Here's to hoping that this year gets better and that outbursts' decrease!
-Crazy4quirky

Sunday, June 12, 2011

IEP season

Every May since my son was 3 I have attended IEP meetings regarding his education. And every spring leading up to that meeting I worry, stress, and research until I feel like I have figured out what is best for my son. This year was especially hard due to a placement change that was being proposed.
My son for the last two years received services in the self contained Autism class, while being exposed to a general education as much as the staffing in his class could allow. In this year we have seen the most academic growth to date. For the first time he was grade level in several areas; a much welcome relief to his father and I. However, now with his new found skills ( insert sarcasm...I've always known he was brilliant!) the county wants him to switch programs and enter the High Functioning Autism Class, where he would mainstream for the majority of the day.
Now I know you might be wondering well what's the problem with that? The new program is at a different school, and one that is let's just say less than desirable. The teaching staff seemed to be wonderful, but I was sick to my stomach at the thought of not only throwing my son into a mainstream class for the full day for the first time, but that it was in an environment that worried the heck out of me. Children with autism are so impressionable and my son is extremely driven by his environment......so why would I want to send him somewhere that is less that was he deserves. I wouldn't!
Now begins the IEP drama of a lifetime. I wanted my son to remain in his current school, in his current program (autism teacher) and be given the opportunity to be exposed to mainstream more; insuring a smooth transition. But apparently I am off the mark because my son now no longer fits the criteria for that program. The IEP team (and county staff) wanted me to send my son to this new school, or he could stay at the current one, but loose the autism teacher. I am a firm believer in the fact that parents know their children inside and out and should be given the ultimate say so in their educations. I am and always will be the biggest advocate for my son! He deserves the best and shouldn't have to be shifted all over the place because he has a disability. He is only 7 and is in his 2nd elementary school; we have lived in the same house since he was 2 years old. If I would have chosen to switch him that would make 3 schools in the course of his education.
How many others out there are comfortable with not signing their children's IEP's? I find that when I don't sign them and instead think them over and see what else I can come up with, I feel much better. It's hard to forge new ways and go up against systems that have been in place for years, but I will continue to find new ways for my son. I will seek help, read until I fall asleep, ask the unasked questions, be the bitch, and in the end I will know that I have done everything I can and I thought I couldn't do for him...... because he deserves someone who will speak for him. Children with disabilities deserve nothing less than equality, and I intend to fight for it everyday and every IEP meeting.

Tuesday, May 24, 2011

What Superhero Mom’s want (and what don’t we want)

I read a similar list on the blog of a Dad who has a child with Autism… I thought I’d make my own version of what Moms of kids on the spectrum want most:

What we want:
- We want our children to be loved and accepted.
- We want to educate about Autism.
- We want to do EVERYTHING possible for our children to be successful (and sometimes that includes things you may not understand – meds, supplements, special diets and therapies) please be supportive of our efforts.
- We want our children’s’ teachers to be understanding, accepting and be willing to think outside the box.
- We want you to be understanding and teach your children to be understanding of differences and difficulties that EVERY child has.
- We want you to understand that Autism is a spectrum disorder. Just like every child is different, every AUTISTIC CHILD has different abilities and difficulties.
- We want to celebrate our child’s successes not matter how small they seem.

What we don’t want:
- We do not want to hear about how “normal” our kids look.
- We do not want to battle stereotypes.
- We do not want parenting advice from complete strangers. (or not so complete strangers)
- We do not want to have to fight the educational system which sometimes tries to fit square pegs into round holes.
- We do not want to be judged when we have to medicate our child; these decisions are not made lightly.
- We do not want to receive dirty looks when our child tantrums. Our children may look just like neuro-typical spoiled brats, but looks are deceiving.
- We do not want to answer the same questions over and over (how is potty training coming, is he talking yet, etc.) If you are concerned, so are we, we don’t need to be reminded every time we see you.
- We don’t want to hear “any child would do that at that age”. We’ve gone through countless evaluations and multiple diagnoses, don’t trivialize our struggle.

Any I forgot?

Tuesday, April 26, 2011

Biomedical

OK so I have been putting off posting this because I have been insanely busy. But biomedical has been extremely important to us superhero moms and I want to get this information out there to all of you other moms looking to help your babies. This will have to be a series of blogs as biomedical is a lot to take in, as superaspie mom said it can be technical, but I will do my best to keep it simple. First I need to say that I am not a medical professional, and nothing I say or write should be taken as medical advise. I am a mom who did countless hours of research and everything I have tried with my son I have done so under the supervision of a Doctor.
So firstly understand that biomedical and the DAN approach is not one size fits all, just like your child's Autism is different that another child's, this type of intervention is as well. I cannot stress enough the importance of doing your research, reading, reading, and reading some more and mostly trusting your instinct; you know your child best. So here we go!
1.) Locate a DAN Doctor. you can do so through this link
2.) Think about diets, there are many that you could try.....we have all tried or are still currently on GFCF....http://www.talkaboutcuringautism.org/tag/gfcf/
I lived on TACA when my son first got diagnosed. A great book to get would be Special diets for special kids http://www.amazon.com/Special-Diets-Kids-Lisa-Lewis/dp/1885477449/ref=pd_bxgy_b_img_b
3.) Start journaling!!! This will help you later when looking back and trying to find correlations.
4.) Vitamins- start reading about supplementing, and how particular vitamins might help your child. Write a list of all the things that concern you....ie: sick all the time, ear infections, doesn't sleep, stims all the time, doesn't talk, won't eat, constipated, diarrhea, no eye contact, lack of attention, and oral fixations. These are obviously just a few in a sea of "isms" specific to your child, but organizing and pinpointing things will enable you to get organized and determine what could help your child the most. I am a huge fan of Kirkman Labs products, they provide really useful information regarding supplements....http://www.kirkmanlabs.com/
5.) Money- everyones favorite topic.....I think I will blog on this at a later date.
This is just a tidbit of information and I will continue to add more on this topic.

From Asperger's To Autism

Starting in May 2012 the guidelines physicians use to diagnose children with Autism Spectrum Disorders – The Diagnostic and Statistical Manual of Mental Disorders (DSM V) - will have some significant changes.

Proposed among those changes are the removal of Rhett’s Disorder (this is a medical condition), and elimination of the classifications of PDD-NOS (Pervasive Developmental Delay – Not Otherwise Specified) and Asperger’s Disorder. Also, in addition to the name change to “Autistic Disorder”, there is a proposed severity level – level 1 (requiring support), level 2 (requiring substantial support) and level 3 (requiring very substantial support). http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

So now when you bring your child to Dr. Specialist you won’t walk out with a diagnosis of Asperger’s, you will get Autistic Disorder level 1. But the same kid who may have had PDD-NOS will also get Autistic Disorder level 1. And the kid who would have been labeled Autistic anyway will also get the label of Autistic Disorder level 1.

The rationale behind the change, in my opinion, does make sense. The criterions for diagnosing Asperger’s Syndrome were very subjective and not always used correctly (even in my son’s case). Do I like it? I’m not sure… My child is an Aspie. He has definite personality traits that seem to match him up with other Asperger’s kids and adults, but again, those seem like personality traits, not diagnostic measures. He doesn’t exhibit a lot of “stereotypical” autistic behaviors: he doesn’t stim, he doesn’t have a lot of repetitive speech, and his sensory issues are relatively mild. But he does have little to no interest in others’ thoughts or ideas, trouble with eye contact, difficulty controlling his impulses, and a higher than average vocabulary (little professor).

The Asperger’s community as a whole, however, seems pretty upset. Their argument (probably rightfully so) is that the stigma attached to Asperger’s is bad enough, the stigma attached to Autism is even worse, how will this help us? I have noticed that adults with Asperger’s and parents with teenagers are the most vocal, so hopefully they are thinking of stereotypes that our children will never face since Autism awareness has increased so dramatically.

What do you think about these changes? Is there a need for a distinction between Autism and Asperger’s? Is it going to help in diagnosis? Services? Understanding?

Saturday, April 16, 2011

I have Autism?

My husband and I have been watching the show "Parenthood" on and off for a while now. I have mixed emotions about watching a show that hits so closely to home. In it (if you haven't seen) one of the main couples on the show is struggling with a fairly recently diagnosed child with Asperger’s. The show that really struck a chord with us was when the boy overheard his father arguing with his brother about his therapist and how she had been helping his son cope with his Autism. The boy of course wanted to know what Autism was. The parents botched it big time! Mom was crying, Dad was calling it a disability... The son left seemingly uninterested with none of his questions answered. In our house, Autism is not a buzz word. Thomas learned about it much like the boy in the TV show. I was talking to a younger cousin who hadn't realized that someone she knew from school had autism. I asked her "Would you have known that Thomas had autism?" not realizing that he was listening as well. He asked me "I have autism?" and I responded "Yeah, you do bud." And that was that for quite a while. We've talked to him about how he thinks differently than a lot of the kids he knows. "You mean like how I taught myself to read when I was 3?" Yes, buddy, just like that. And about how it's harder for him to understand kids on the playground "not everyone wants to talk about Pokemon as much as you do". I've also had to talk to his younger brother a lot about what it means to be the sibling of an Aspie. Patience is the biggest lesson Adam has had to learn, but I know that it will serve him well going forward in life. (Adam's still not quite understanding why he doesn't get to ride Mr. Jack's special bus to Kindergarten next year since Thomas got to when he was 5!!!) After watching the "coming out" episode of Parenthood, however, SuperAspieDad and I have decided to make more of an effort to make sure that Thomas grows up understanding what makes him a little bit different also makes him special, and that instead of a "coming out" conversation, it will just be a way of life in our household... nothing to hide, nothing to be embarrassed about and nothing to apologize for. This morning when as (JennPeace likes to say) "The Holy Spirit came over Thomas" and he was expressing his profuse love for me. I said something like this: I love you so much Thomas and I am SO proud of you. Do you know why? Things that are easy for other kids are not so easy for you, and Mom and Dad know that. That's because you have Autism. He asked again what autism was, & I told him... Remember when in preschool it used to be really hard for you to behave? And it was so hard for you to calm down when you got upset? That's because you have Autism. But, you know how you can remember EVERYTHING you read, and you are super-awesome at math, again that's because of the Autism. Mom and Dad are so proud of you because you are behaving so well, and you don't get as upset anymore, and we KNOW that these things aren't easy for you, that's why we are proud. And we love you so, so much.

Saturday, April 9, 2011

Sports

So I am planning to post later regarding biomedical intervention and how it has been such a wonderful and rewarding experience for all of our boys. But first I wanted to write about organized sports and how we have found a place for our son to be a part of them. We enrolled our son in Chesterfield County Challenger Division to play baseball last season and have done the same this season. We have opening day this morning. It has been such a wonderful and rewarding experience, and I can not thank the people involved enough. Our son, who is unable to participate in regular sports, due to attention, direction, and physical problems was able to join other children like himself and feel part of something that so many other kids get too. He loves this division, and all of the patience, love and understanding that comes along with it. The coaches allow for everyones disability, while not allowing it to hold them back. They have special helpers ( a cute little girls, my superheroes couldn't stop hugging) that will stay on the field with the player and run with them during their turn to bat.Yes, it can be chaotic with multiple disabilities and needs on the field, but it is also teaching my son to be a part of something that brings reward. I am so grateful to be surrounded by others that share our journey, and give my son encouragement to try hard and learn sportsmanship through this program. He hit the first ball thrown to him today and was the most precious thing running base to base.
If any of you guys are ever interested in sports for your kids, check with your county for challenger divisions, miracle leagues , or even the regular ones. Superaspiemom, has had her son in the general baseball, and soccer. Don't let fear of non-cooperation or motivation stop you, I never would have guess Seth would love it this much. So in the words of Seth " you play ball like a bunch of girls".