Friday, October 31, 2008

Happy Halloween- GFCF candy

It's Halloween time!! I LOVE Halloween! I asked Thomas over at The GFCF Experience to post a list of GFCF candy and here is a list of what he posted, click here to read the whole post:

Starburst Fruit Chews - The original fruit chews, others may or may not be GFCF.

Skittles - same as above. both Starburst and Skittles have cream varieties that I don't think are CF.

Lollipops - DumDums and Charms are GFCF, as are most lollipops that do not have a cream component in them. Tootsie Pops are a definite no no here!!!
Sweet Tarts


Smarties - Note that the Smarties necklaces reportedly contain gluten.

NECCO Wafers

Jolly Rancher Hard Candy


Bottle Caps

Pixy Sticks



Gum - Double-Bubble, Wrigleys, Trident (NOTE: read labels and watch out for Recaldent, a casein derivative, in some gums)

Mike and Ike

Haribo Gummy Bears

Jelly Beans - Starburst, SOME Jelly Belly, Jolly Rancher, Mars (PLEASE READ LABELS!!)

ACT II Popcorn Balls

Mary Jane's

Candy Corn and Candy Pumpkin - most of these are GFCF, but we have seen some that are not. Again, you need to read the labels to be sure.

Farley's Candy and Sather's Candy - Farley's and Sather's sell bags of candies, like gummy worms or candy corn or other hard candy. But on their website, they do not include liGFCF information, citing the fact that ingredients do often change. They offer you the option of filling out an on-line request form, or simply calling them at 1-888-247-9855 to request the GFCF information. AND MAKE SURE YOU READ THE LABELS.

Have a safe and happy Halloween!

Saturday, October 25, 2008


Just a short little blog to congratulate Corbin on scoring TWO of his team's six goals today!!! When he actually puts his mind into the game he's quite the little player! You could tell he felt so accomplished when everyone on the sidelines were yelling his name and clapping for him. He smiled so big and asked his coach if he could go tell his Mom. As if I didn't see it :) We're so proud of you Corbin :)

Thursday, October 23, 2008

Palin & Special Education

I copied & pasted this from the Age of Autism blog. I think it's very important for parents of special needs kids to read before the vote next month.

Managing Editor's Note: This letter from attorney Jennifer Laviano (below) was featured in David Kirby's Huffington Post piece (HERE) after the last debate. Ms. Laviano specializes in special education law. On October 14th, she sent this email to share her impressions of what we might expect from Palin if elected Vice President. As you know, we at Age of Autism are extremely concerned about vaccination safety and vaccination choice for parents. We also have to consider the education and adult services that will be available for the children who are growing older every day. Thank you to Ms. Laviano for permission to reprint her email.

Sent: Tue, 14 Oct 2008 2:14 pm
Subject: Palin and Special Education
Dear clients, friends, colleagues, and all of the above,

As we near the Presidential election in just three weeks, I have been asked by many of you to comment on my thoughts on Gov. Palin and what she can and will do for special education students. As an attorney whose practice focuses exclusively on the representation of children with disabilities, I always investigate candidates' positions and records on this very critical moral and financial issue. One of my clients recently suggested that I share with others what I have learned, and so here it is.

When Gov. Palin first came to my attention, I was, as I am sure all of you who care about this issue, intrigued to have someone on the national platform who talks about children with special needs. Since hearing her say this repeatedly in speeches, I have been waiting, and waiting, to hear some specifics on special education reform. Most of all, I want to know what her stance is on the IDEA, the federal statute that governs special education. The IDEA is up for reauthorization by Congress in 2010, and it is crucial that it reflect the policies and funding structure necessary to protect and appropriately educate our children with disabilities. I needed to know what Gov. Palin thinks about the future of special education legislation in this country.

I know where the other three on the tickets stand; Senators Obama and Biden have issued position statements on the IDEA to various parent groups, strongly supporting full funding for the IDEA and the rights of children with disabilities and their parents. The Obama-Biden website has a direct link to the ticket's position on disabilities. Senator McCain's website does not have such a link and neither he nor Palin have provided those positions on the IDEA to parent advocacy groups. Senator McCain does have a supportive position on the ADA (Americans with Disabilities Act) which has been published. I was, however, extremely disappointed in his discussion on the Senate floor regarding the Reauthorization of the IDEA 2004, in which he expressed his concerns that parents of children with disabilities who have to sue to secure appropriate services for their children under the Statute and win against districts shouldn't have their attorneys' fees covered. This is not just a matter of self-interest for me, t is the difference between families, especially poor families, being able to vindicate their civil rights or not. But I knew those things, I did not know where Palin stood, and I wanted to find out.

Having waited for some specifics from her on just how she is going to be an advocate for children with special needs in the White House, I finally got close. In her recent interview with Greta Van Susteren on Fox News, she was asked what her position is. While never mentioning the IDEA at all or what needs to be changed, kept, or fixed in it, she stated that the issue that needs to be addressed is "equal access" for children with special needs.

EQUAL ACCESS? Seriously? We HAVE equal access, that is what the original version of the Statute fought for in the early 70s, when children with disabilities were literally prohibited from attending our public schools. Equal access is so far in the minority of what needs to be addressed in special education I hardly know where to begin. Our problems are not that children with disabilities aren't allowed into the buildings; our problem is what happens when they get there! What about a Free and Appropriate Public Education? What about "meaningful educational benefit?" What about giving children with special needs the tools to thrive and prosper and be fully independent adults, which is what the IDEA now stands for? We are decades fro m equal access being the key question, and apparently Gov. Palin is not aware of that fact.

Now, you might say "well, Jen, I am a parent of a child with special needs and I didn't know that either." Okay, my response: "are you running for Vice President of the United States? Are you telling the nation that you would see yourself as the voice for those children within the federal government? If you were, do you think you might have looked into it a little bit?"

It is not terribly surprising to me that Gov. Palin's views on this are so far outdated. I have traveled to Alaska to give a speech to parents and professionals on the subject of the rights of children with special needs, in particular children with autism spectrum disorders. I was stunned by how far behind the State was from the vast majority of the rest of the country on the education of children with disabilities. Perhaps, for Alaskans, "equal access" IS the problem, but it is certainly not the case in Connecticut or most of the rest of the country. I am in regular contact with a colleague of mine who is a Parents' attorney in Alaska, who has had to fight tooth and nail for children with special needs in Alaska simply to secure them the most basic of services that we take for granted here. I for one do not want the rest of the country to use Alaska's system of educating our most vulnerable children as a paradigm.

Okay, yes, you all know I'm a liberal...but that's one of the reasons that I chose to get into the field of representing children with special needs, because I believe in my heart that this last bastion of civil rights is absolutely critical to fight. We need major fixes in our special education system, and if you think that who is in the White House does not effect you on this issue, you couldn't be more wrong. IT MATTERS. It matters in terms of funding and at least as, if not more, importantly, enforcement. Our IDEA enforcement, even in States like CT where we have zealous advocacy, is woefully inadequate. School districts routinely violate the procedural and substantive rights of children and parents and only in a small fraction of cases are they taken to task for it. It also matters because the next President will have at least a few Supreme Court appointments to make. We have had more decisions from the United States Supreme Court in the area of special education law in the last few years than we had for decades. Those decisions have tremendous impact on whether parents have the right to have proper evaluations done for their children, how and when parents can exercise their rights under the IDEA, who has the burden of proof in Due Process Hearings, and a myriad of other issues which directly impact our children with special needs.

Whether we properly educate and embrace our children w ith disabilities is crucial to the future of this country, as the cost of NOT doing so will be far larger than the cost of doing so...leaving out the fact that it happens to also be the right thing to do in a great society. This issue should be front and center for any candidate for the White House, and I write to let you know that, at least as far as Gov. Palin is concerned, it has been an opportunity not only missed, but frighteningly misunderstood. It does not bode well for her, for us, or most importantly, for the children we love who need and deserve better in an "advocate in the White House."

I will be casting my vote on November 4th for Obama-Biden, and I hope you will join me. They and their party have been on the side of children with special needs historically, and they will be on their side in the future. As our economy implodes and State and local educational budgets tighten, if we do not turn this around now, I fear that we will, once again, be fighting only for "equal access" for our kids. That is unacceptable to me.

Finally, for any of our more conservative clients who I may have offended, my apologies; I respect your views even if I disagree with them. However, to calm your concerns, Attorney Dana Jonson and I have convened a Personnel Board consisting of the two of us, which has investigated the matter and determined that you continue to have excellent legal representation.0

Thanks for reading, please feel free to forward this email to any and all people you know who care about the future of special education in this country.

Best, Jennifer Laviano
The Law Offices of Jennifer Laviano, LLC
Sherman, CT

Tuesday, October 21, 2008

Communicating with Pictures

Although we've used PECS with Brian for over a year just in the past couple of weeks he seems to be really motivated to "talk" with his pictures. I'm not sure if it's the introduction of his SuperTalker or what but I love it! Some instances:

* He came down stairs with two train tracks in his hand and the picture of trains from his PECS and gave it to me. I asked, "Do you want to play trains?" He said "Yuh". Then went back upstairs to play. It wasn't as if the trains were in a place he couldn't reach- he just wanted to tell me that was what he was going to do!

* He was upstairs playing trains and Josh peeked his head in and said, "What are you doing Brian?" Brian ran to his SuperTalker, pressed the trains picture, and said "Cah" (all vehicles are cars to him)

* On several occasions he will hit the correct food items on his SuperTalker to coordinate with whatever we are eating for dinner. And then try to say the beginning sound of each word.

* He brought the juice picture from his PECS to me yesterday and said "Ju" instead of just trying to open the fridge and get it himself.

* This morning we were waiting for Jenn to come and he went to his SuperTalker and pressed the picture for "Outside" and then got himself dressed so we could wait outside for Jenn.

I'm so happy that he can communicate with me- no matter how he does it. Of course my biggest wish for him is for him to talk but I'm happy with just knowing what he wants or needs. And so happy for him to WANT to share what he is doing with me.

kissing girls

For the past couple of weeks Corbin has been coming home from school with a lot of artwork that wasn't done by him. They were all gifts from a classmate named Chloe. After the fourth time it happened I guessed that maybe there was a special relationship forming and I asked him if he liked Chloe. He answered with, "Yeah, she's my girlfriend" with that dramatic attitude that he has. I laughed. I thought it was cute, honestly. An innocent childhood moment. Last week he came home with a book made by his peers. Each classmate had to make a page about Corbin- most consisted of a picture of a boy and underneath it said "He is 5". I came to a page of a boy and girl with a big heart over them and the sentence, "I like Corbin." I smiled to myself as I knew whose it was, I flipped the page and saw her name on the back. I laughed and giggled while I shared the story with Corbin's aunts and grandparents.
BUT yesterday Corbin came home from school with a note that said he was caught by the principal kissing girls at recess. Okay, so maybe not so good anymore. I have to admit I still laughed when I read the note. C'mon, this is what my kid gets in trouble for? He's a lover. Not a fighter. I asked him why he was kissing the girls and he said "Cuz they want me to". Fair enough. My boss laughed at that one and said that he is more intuitive with girls than her 15-year-old son. Obviously I couldn't completely laugh it off though. In my mind this is just an innocent thing but I know that no such thing exists nowadays. I've actually heard of kids, as young as him, being suspended for similar behaviors. So after I was done giggling to myself I put on my serious face and we talked about only kissing family members and how it's not okay to kiss friends at school. He promised not to do it again. Hopefully he remembered today when and if the temptation arose at recess.

Thursday, October 16, 2008

Observing Brian @ School

This morning I snuck over to Brian's preschool before work so I could watch him for 15 minutes without him knowing. They have a therapy room adjacent to the classroom that has a window to peek through. I, originally, thought it was a two-way mirror and I ripped open the curtain only to find one of Brian's peers looking directly at me lol. I quickly closed it and hoped that I hadn't disturbed the class too much! I watched through a little sliver and found Brian doing some stamping with his one-on-one. After a few minutes she guided him over to a leaf-rubbing activity. While at the activity I watched another one-on-one guide her boy over to Brian (it's an inclusive classroom with two autistic boys and a few others with speech delays- the rest "typical") and she said "Say hello to Brian"- at this Brian turned his head, looked at the other boy, and said "Hello" without his one-on-one prompting him. That was so amazing to me! Though Brian has made leaps and bounds with interactions with adults- interactions with kids are still very hard for him.
After that he was asked to point on his supertalker what he wanted to do next- he picked the writing center. At that center his one-on-one was doing her technique to get him to write his name- making one line of each letter one at a time saying "Do this" and then he'll repeat the one line (or curve or whatever). I watched him make the B and the R in this manner. Well when it got to the "I", he finished putting the last line all by himself before his one-on-one even had a chance to do it! He remembered all by himself! I am so proud of his progress!!!! Last year at this time we were removing him from the inclusive program as he just couldnt' handle it- he was being removed from the classroom every 5-10 minutes because he was just tantruming too much for the other children. Now watching him, I could just cry, he was blending in with all the other children there! I am soooo proud of him!

The picture above isn't from today but at his registration day at the preschool. He was busy putting the numbers in the correct order, as they NEED to be according to him :)

Apraxia & Augmentative Communication

It's official. The term "apraxia" has been thrown around a lot around Brian. By his occupational therapist, his speech therapist, and even myself. I would always say "It's almost like on top of his autism he is dealing with some apraxic issues..." Well, just like when I was hinting around about autism, I was right. His speech therapist finally said, out loud, yesterday "Oh yeah he's definitely apraxic". Poor guy- what else can we throw at him to make understanding & communicating with the world any harder?
I've only read little things here & there about verbal apraxia when we had a couple kiddos in our school last year with it so I still need to do tons of research so I can fully comprehend it- which is good as I was telling our one-on-one that I've read everything there is available on autism- now I have some new reading material. Yes, I try to make light and find the good in everything!
But here's what I know for those who are interested:
Apraxia of speech is a disorder in which a person has trouble saying what s/he wants correctly and consistently. It's a motor planning issue. They have a really hard time planning the movements and remembering how to produce sounds, even if they have made the sounds before.
Here's a website to learn more about apraxia- Apraxia-KIDS

Also on the speech front, Brian started using an augmentative communication device a couple weeks ago.
My feelings on using a device have in the past been questionable. I can see both sides of the argument- one, it could help language development by allowing him to see that "Wow! Words can make a difference- it can help me get what I want or need"- I feel it could be completely rewarding for him to see the cause & effect of language like that and also just to have the words always repeated to him when he pushes the button. On the other hand I could see how with some kiddos they could just get lazy and let the board do the talking for them and not worry about trying to produce the language themselves. But, I decided to put my fears aside that the latter might happen and go ahead and try it.
Really the big push for me to try it is the fact that Brian will be in kindergarten in the fall. Kindergarten. Can you believe it? And I am scared. Genuinely frightened. Anxiety about it almost everyday and everynight before I all asleep. I know I need to relax a bit but it's hard. He will be going to school, and unless big things happen before then (lord knows i pray for it everyday), he'll be going with no language. No way to communicate. Sure, myself and his one-on-one know him so well- we understand his language, his rudimentary signs, and his gestures- but how are all these new educators in his life going to know what he wants. So honestly I was excited about the idea of him being able to have a "voice" when he makes that transition next year- be it his own (which I'd prefer obviously) or a computer's.
So this is his talker right now. It's an 8 grid program so he can have eight pictures on the "screen" at once- it has 8 channels so 8 different cards are programmed into it. He's already showing that this is too "small" for him- on a couple occasions I've caught him trying so hard to open up the compartment in the back to find the card he's looking for. It's funny because we've used the PECS for so long but he just never had the drive to use it but he seems to enjoy using this board. AND he always repeats the word (or tries so hard) after the talker says it. So we are looking into something more compatible to him- perhaps a Dynavox. I'll keep everyone updated :)

Tuesday, October 14, 2008

Masgutova Method

A couple of months ago Brian's OT, M, asked if I would be willing to let her try a new therapy with Brian called the Masgutova Method. I've trusted her instincts, as she's been working with my family for a long time and said, "sure, why not?" I'm usually willing to try anything new!
So every week I joke that Brian is going to his "weekly massage" as we head off to his therapy sessions. I would watch through the two-way mirror and laugh as I watched him climb on to the massage table and just lay there and be putty in M's hands. Two weeks ago I joined in as M showed me the technique so I could carry it over at home.
Now Brian and I have this lovely bedtime routine, after his bath, we go to his bed and he lies down and I give him the full-body massage- right now we are concentrating on tactile but soon will be adding in more neuro-techniques. Brian loves it and over the two weeks I have watched him become more aware of his body- sometimes trying the techniques on himself right after I do them. He's becoming more "loose" and allowing me to control his body rather than being rigid and thinking he needs to control every bit of his body. And he's been sleeping better! In fact the first night we did it at home he fell asleep while I was doing it!
Tonight after Brian's massage Corbin asked if he could have a turn. So I practiced on him- he was much more rigid than his brother but definitely funnier- counting out loud the steps and giggling when I reached certain points on his body. After he returned the favor and gave me a spastic version of the massage.
I'm hoping we'll see more progress with Brian with this new technique but I've realized even if we don't that it's a great new family tradition as we all enjoy it and it gives us another excuse to be close to eachother and to laugh together.

Mrs Frisby & the Rats of NIMH

Tonight Corbin decided he wanted to start reading a big chapter book, like Mom, before bed- so aside went our Dr. Seuss, Skippyjon Jones, and other favorites- and we settled on Mrs. Frisby & The Rats of NIMH- he really wanted to do the Harry Potter series but after a thorough search I realized I don't own the first one in the series. He wasn't too upset though after I told him how much I loved the Rats of NIMH book when I was younger and had read it many, many times.
So I read the first chapter to him this evening before bed. A few times he started mumbling numbers under his breath and I had to pause and say "Corbin if you aren't going to pay attention I'm not going to read you the story" which quickly made him stop. While reading I was kind of worried that maybe we had made a mistake as the story seemed to me like it could be a bit above his head, but after the story I asked him several questions about the chapter and he replied with correct answers to each one. He said he liked it and couldn't wait for tomorrow night. It excites me so much to share one of my favorite childhood books with him :)

Saturday, October 11, 2008

What will he say next?

Brian isn't the only one in our family that has struggled language-wise. Corbin, as well, has a speech delay- obviously not even close to the extent of Brian, but he does. He was first evaluated when he was eighteen months old and started receiving services soon after. He went into speech therapy with just a handful of words and I remember about six months into it he had fifty words- which was just so exciting :) He still struggles- most of it all with syntax. He's all over the place on his evaluations- his most recent one scoring him on some areas in a 2 yr 3 month old level (he was 5 yrs 10 mos at the time) and in another areas as high as 7 yrs 11 months. So like I do with Brian, I also treasure little things that come out of Corbin's are a few of the recent ones:

*Just out of nowhere- "We'll see what happens next week on Cartoon Network"

*C: "Why is that little kid in the front?" (observing an illegaly sitting child at a gas station.)
Me: "I don't know why."
C: "Think Mom Think" (he always says this if I reply with "I don't know" as if I'm not allowed to not know something"
Me: "Well I guess his Mom most of let him do that."
C: "Why his Mom let him do that?"
Me: "Who knows"
C: "Who knows....we'll find out after the break" (see a trend of too much TV here lol)

*C: "Can I go to you school tomorrow?" (he had a teacher workshop day but my preschool was still open)
Me: "I don't think so Corbin, you are getting too big to go to my school- we have really young kids now"
C: "When you have big kids again?"
Me: "I don't think we will honey, you are in kindergarten now and I don't teach kindergarten so I'll always have preschool kids."
C: "Well you tell them tomorrow that your son is in kindergarten and don't worry someday they'll be big like me and in kindergarten too- how about that?" (I just love that he was able to formulate the "your son" part- this kid is a barrel of laughs every day)

Brian is featured as a "Child Warrior"

Check out Age of Autism today! They are running pics of "child warriors" (named so after Jenny McCarthy's new book) and this morning it was Brian's turn :) I love the picture of him they used- it's him interacting with me and the camera- sure, it might not be a genuine smile but instead that half grimace/half smile that we affectionately call the "cheese face"- I have grown to love that face :)

Wednesday, October 8, 2008

the dentist (da-da-dum)

Over the past couple of weeks we've managed to get myself, Corbin, & Brian all into the dentist. I, unfortunately, had not been to the dentist in a few years because of insurance issues and trying to make it on my own as a single mom so I was super excited to go but also super-nervous as I was well aware that I did have cavities- and up until now I had never, once, in my life had a cavity so I wasn't sure what to expect.
Corbin got a clean bill of health- which I was pretty positive would happen.
Brian wouldn't even let them near his mouth at all- which I expected to happen. No surprises there. They did get a teeny tiny brief glance in and said they saw at least one cavity- again no surprises as he won't allow me to brush his teeth. So we have set up an appointment for him next week at a pediatric dentist to see if he will be a good candidate for a sedated cleaning & filling(s).
Then on to me, I have FOUR cavities!! Not fun at all. I go back in November to have one filling and one sealant which he recommended. See how I go from there and see if I want to schedule the next three all together or not. I'm scared! We also talked about braces- I have these two teeth in the front that are way squished together so one is back further than it should be and the other is more in front. I also have the option of just putting like a filler on the top of the one that is back to give the illusion that it's not back so far. I have to decide. In a way I really want to just fix them with the braces but in another I'm kind of thinking, let's take the easy route. I don't know how I feel about being a grown woman with braces- even though I've known plenty of adults that do have them and obviously I don't think any different of them. Decisions, decisions.

Sunday, October 5, 2008

Mount Batty

What a wonderful fall day!! The sun was out and we decided to pack a picnic lunch and head off to Mount Batty for the afternoon. We drove up as I wasn't up to the task of carrying Brian up the mountain- he doesn't always enjoy walking and thinks he needs to be carried everywhere. We probably could've managed if Josh's arm wasn't in a sling so we could take turns. It was so beautiful, peaceful, & serene up there. The boys loved exploring and especially loved the tower!

A Child's View on his own Autism

You need to check out this post over at Age of Autism!!

Friday, October 3, 2008

a GOOD pediatrician appointment

I was incredibly nervous for Brian's well-child check-up today. The boys' pediatrician and I had been kind of on the fritz since Brian was diagnosed with autism. The first appointment I had with him after the original diagnosis I looked him in the face and said "Talk to me about the link between autism and vaccines". The answer I got was typical from a pediatrician and I think most autism Moms know exactly what I'm talking about. I got the same answer from him when I asked about changing Brian's diet. Well obviously I didn't take his advice to heart because Brian was on the diet soon after that. I was lucky in the fact that Brian didn't need any more vaccinations at that time.
Today was the first appointment since when he needed to have immunizations. I brought along Josh and told him he needed to come to be on my team and no matter what he had to agree with me and not agree with the doctor (as Josh is still on the fence- he never got to see the Brian before vaccinations which I think would've definitely sold him)- Josh agreed he'd come be my support.
As we're waiting in the waiting room I decided to see what was new on the bulletin board. Of course there was a huge print-out about how the MMR vaccine does not cause autism. How Wakefield's study was full of holes & mistakes. I thought I was definitely in for it when I told our doctor I was not vaccinating Brian.
First thing I brought up was doing the sedated hearing screening for Brian- which was actually something I brought up at the last appointment. Brian has been to so many hearing screenings with always the same result- not being able to finish. The doctor said he'd get right on making the referral for us on that as well as a vision screening while we're there. I then brought up allergy testing, which I have been shot down on before, as well, from him. Guess what? He said he would set us right up with an allergist. Of course I also made sure to make lots of little comments about things he's doing and how he wasn't doing them before the diet changes- I love to do that everytime we go there.
After all of that the doctor said, "I guess the only thing left is some immunizations." I took a deep breath, readied myself for an all-out battle spewing out all my facts and views and feelings (seriously I had a huge speech prepared in my head" and just said "I'm not continuuing vaccinating Brian at this point in time." I waited....prepared myself.... and heard, "I'm not surprised at all. You're not my first autism mom I've heard this from, believe me." And that was it. No pressure. No nothing.
I'm hoping that perhaps he does have more & more patients with autism and maybe he's starting to hear more & more personal stories of how vaccinations, food, viruses, toxins, etc. has made our beautiful children regress into autism.

Thursday, October 2, 2008

Corbin's Thoughts on "Are You My Mother?"

Last night our goodnight book was "Are You My Mother?" by P.D. Eastman. After we finished the book we had a little conversation about his favorite part of the book- it went something like this:
Me: "Corbin what was your favorite part of the book?"
Corbin: "I think it silly when he ask everything if it was the mommy because they don't have the same parts."
Me: "Oh you mean because the animals & machines he talked to didn't look like him?"
Corbin: "Yeah they have to look the same."
Me: "Do you think you look the same as me?"
Corbin: "Yeah, we have the same parts- the same eyes, nose, mouth.... (pause) but I don't have boobs- just little ones"
Very observant child :)