12.08.2009

Letters to Santa

The difference between my 2 children is clearly displayed in their Letters to Santa this year.



















My daughter has taken 3 days to write Dear Santa and draw a garden with flowers and grass, she isn't done yet - nor has she asked for anything (Yet!)

My son took all of 30 seconds to write (in his favorite color green) a specific list of video games he wants. I was aware of all but one of them, so I am glad I had him take those 30 seconds out of his day to spell it out for Santa!

Dear Santa,
I would like Ice Age: Dawn of the Dinosaurs DS,Gardening Mama,Cooking Mama 3: Shop & Chop, and Rabbids Go Home DS.
Love, Alex


So, there we have it!

Ps. Santa, I'm asking for a new digital camera since mine stopped working a couple weeks ago and now I can only take pictures using my cellphone.

11.29.2009

My Thanksgiving Miracle

Alex ate a turkey leg.
Its days after Thanksgiving 2009 and I am still on a high.















The last time that my son ate a turkey leg he was 11 months old. He ate all the food on his plate (adult food) and went grabbing for more. He was also quite chubby!



















About a month later he received a vaccination cocktail that his body couldn't handle and landed in the ER. Then he got sick, and sicker, and spent almost a year on one antibiotic after another. During that year he ended up getting diagnosed with Autism.

He never ate another Turkey leg again. In fact, he wouldn't touch most of the comfort foods of Thanksgiving - really he wouldn't eat any of them. We had to always make him separate foods. When we started him on the gluten and casein free diet, his eating improved but then still had to make him separate foods that he would like.

This year, he ate turkey. He started with the turkey leg at his request and moved on to white meat. He has been eating leftover turkey meat the entire weekend.

He's happy.
I'm happy.

And even happier is that when I shared this conquest with friends I learned that 2 friends who are also parents of boys like Alex - on the autism spectrum, super picky eaters... Their boys ate turkey too. Such a huge accomplishment to be thankful for, one worthy of celebration.

11.26.2009

Happy Thanksgiving

Thankful.














photo from my daughter's pre-school Thanksgiving feast. Oh, to be 4 again and wear a paper pilgrim bonnet and enjoy a Thanksgiving feast with paper plates and plastic utensils!

11.25.2009

School Progress Report

My son has a locker! Where did time go?


So, today I had my son's Parent-Teacher conference. At the top of my list was a discussion about food at school and my "finding" that my son was getting glutened and caseined at school. She more or less confirmed that it had happened. I let her know that I wasn't happy about this. She agreed that she needed to be better with me about letting me know that they would be doing a cooking project. She heard my concern and I am going to give her the benefit of the doubt that this will be corrected going forward. If it isn't, it won't be pretty.

Academically, Alex is doing well. He is a math whiz and a good reader. He does need to slow his reading down and do more for comprehension. He needs to apply himself. These are all things that you'd hear during a conference with a "typical" child. It is actually kind of nice to go in and hear these types of comments and has such a feeling of "normalcy". She shared that if he could just stay on task more and get that "focus" down that he could be mainstreamed (I'm really not rushing that, but it was nice to hear). In the "specials" subjects - art, music, gym, library, recess - he is excelling. These have always been difficult areas for him because they are so unpredictable and they are also integrated with typical peers. Those issues are in the past and I view this as a huge success.

Last year we had a lot of issues with the loud speaker (daily announcements) setting him off. I'll never forget when his second grade teacher called me to say that Alex yelled out during the morning announcements that he "wanted the effing voice-over to stop NOW!" (he said the F bomb). This year the announcement issues are in the past. His teacher was by some miracle able to nip this behavior in the bud in the first week of school. Assemblies are still difficult with him. He gets real upset with the auditorium, big group, applause. She has to sit in the back with him and walk him out and give him breaks. One time he got so upset that he was physically sick (vomited). He cries and meltsdown. This was the first I heard of this occurance so I didn't really appreciate the lack of communication from her once again.

The really good news is that my son's class just added a new para-professional that is not "new" to my son at all. In fact, it is my son's favorite para of all times from back when he was in preschool. After 4 years of being in different classes - he recognized her and the pair had a happy reunion. This para is also "on my team" and will be helping to make sure that Alex doesn't get glutened in the future. Once again, my son seems to have wrapped all the para-professionals right around his finger and has built a good rapport with them. Now, if only we could get him to build that type of rapport with other kids in the class.

Goals:

Teacher goal - improve communication all around! No more food issues.

Goals for Alex:
  • Work on improving focus for attending to task on hand.
  • Increase social interactions, build social skills with classroom peers and typical peers.
  • Make it through an assembly without a meltdown.

We can do it. We can do it. We can do it!

11.23.2009

Thoughts on buying a christmas gift for my child with autism?

What do you buy for a Christmas gift for a child with autism?

I would be rich if I had a dollar for every time someone has asked me this. Maybe it is a relative, or a friend's child.. maybe it is even a family member not sure what to buy for their own grandchild, niece or nephew. I wish I could tell you that perfect answer. But autism is a rainbow - a spectrum. The kids with autism that I know, while many are so very similar - all do have their own "thing" that they like. My son loves Disney Pixar, one of his best friends couldn't be bothered with Pixar - he prefers Nickelodeon's Spongebob. Its important to remember that you are buying a gift for a child, first and foremost. Yes, they have autism - but don't forget there is a kid in there too!

So, you aren't sure what to buy that special child with autism for a gift? The first thing that I always tell people is that they should just ask the parents outright for a gift suggestion or if there is a particular character or activity they enjoy. I also suggest asking if there are things specifically NOT to buy.

For example, one year a friend of mine (also an autism mom) gave my son a big art set with crayons, markers, paper. She knew from me sharing with her that he loves to draw logos and cartoon characters. This was such a basic gift and not real expensive either - it was also so thoughtful and he used that art set until all the crayons were worn down or broken and the markers were bone dry. My son loved that art set and would have slept with it if I let him. For my son, gifts like the Crayola Marker Caddy and the Crayola Crayon Tower are perfect and something that I ask for year after year. Never enough crayons and markers. But, for a child who isn't interested in art - or who may continue to put inappropriate items in their mouth - this may not be a good choice. As for what not to buy - I am sure to spell out - for my son who is gluten-free - I have banned Play-Doh from my home.

My son is loved and blessed with many gifts from his family and friends. The quantity of gifts is overwhelming. Christmas is overwhelming. Looking back, there have been Christmas mornings where my son has opened one gift and been interested only in that gift and not interested in opening anything else the rest of the day. One year he could care less about what was in the package but only wanted to rip the paper. This is behavior that you might expect from a toddler or preschooler, but sadly my son was definitely beyond that "age" so while I was so silently happy that he was actually ripping open the paper for the first time ever - some family members didn't appreciate it when he was busy opening all of their gifts up with seemingly disregard. Christmas is supposed to be a happy time but it can be extremely stressful for anyone who has a child with autism in their life. Another year, God bless him, he got a lot of clothes and so anytime he saw a square box he made socially inappropriate comments about "Kohls!". Thankfully, they were mostly positive comments and everyone, including the gift giver, got a chuckle out of it. He wasn't doing it to be funny but it definitely put smiles on all of our faces.

Buying clothes for a child with autism.
We will never ever forget the "Kohls year" (see above).

Kids grow like weeds and new clothes are always appreciated. For my son, I like to remind people that first and foremost he is a little boy. Unlike his sister he does not enjoy getting dressed up and he is definitely his father's son. Give him comfy jeans and a knit shirt any day over button-ups and other 'stuffy' clothes. He just wants to be comfortable and his sensory issues makes him very aware of fabrics that might be a little too stiff, waistbands that might be a little too restricting, and most of all - tags in uncomfortable places. Growing up my mother always used to give all the men/boys in the family socks and underwear and it has become a bit of a tradition for me to do the same for my son and his father. Alex hates socks and doesn't keep them on his feet but he had a pretty good trial run with some Seamless Socks and I also hope to pick him up a few pieces from Soft Clothing. Shoes are also tough - which is why you'll find him wearing sneakers most of the time. He also loves slip-on shoes like crocs and his new favorite, Ugg KIDS Tasman which are easy (slip-on) and also very warm. Though he is almost nine years old, he still hasn't mastered some of the "simple" milestones that kids pass like learning to tie his shoes and riding his bike without training wheels.

My son has High Functioning Autism. He is 8 years old, going on 9 this year. His birthday and Christmas happen to be a week apart.

So, what kinds of gifts is my son asking for this year.

Well, for one thing I guess I could consider a blessing... He isn't asking for any of the "hottest toys" like Zhu Zhu Pets or the Bakugan Battle Arena . He did see the commercial for the fake hamster Zhu Zhu pets and thought they looked cool but I know that this WILL be a toy that gets played with a few times and then nothing. People are lining up and shelling out a ridiculous amount of money for pretend hamsters and plastic tubes that resemble pumped up habitrail sets. A month after the holidays I expect to see these faux rodents on clearance - no, no Zhu Zhu pets here. And so it is with many gifts he will receive. You can't just pull up a gift widget and put in age/gender and come up ahead when you are buying for a child with autism who most likely is completely unaware of the latest trends and fads.


What he does like..


My kids love books. To give you a glimpse into the books he likes (which isn't surprising for those who know and love him, and probably not for my faithful blog readers either). His sister took a Disney Up Storybook out of the library today that he got real excited about. Though he actually reads at a high level for a 3rd grader, he still loves books with lots of illustrations and for him you cannot go wrong with Disney/Pixar. I found that DK publishing has put together a Pixarpedia - an enclyopedia full of pictures and facts about Pixar. For the kid who used to like to read the Honda car repair manual in the backseat of his father's car - an encyclopedia about his obsession (Pixar) should be huge hit.

My computer geek (lovingly) husband who is a network guy was pretty crushed when Alex kept asking for a Macbook repeatedly. Thankfully, he seems to have accepted that is a lost cause and there will be no Macs in this PC household! He can go and play on Macs when he goes to his computer classes at the Small Factory.

My son wants DVDs.

I already purchased and gave him the Up dvd because he was going to burst if he didn't get that on the day that it was released. He is asking for some popular new releases like G-Force, Ice Age: Dawn of the Dinosaurs, Monsters vs. Aliens as well as a favored TV program Phineas and Ferb. Last year I was able to buy many of the DVDs off of the kids wishlist on Black Friday at Toys R Us, Target and Wal-mart for $10 and under. I know that one DVD he really wants isn't even going to be released in time for Christmas - its Cloudy With a Chance of Meatballs which much to Alex's dismay is not coming out until January. January 5th, 2010 to be exact - yes he has that one memorized as well.

The other thing he really wants is video games.

Alex loves to play with the Wii

He is asking for some new Wii games including the newer Wii Sports Resort that uses Wii MotionPlus. It is not a surprise that my "Pixar" kid wants to get Toy Story Mania! and UP both for the Wii platform. He also wants to get the new Wii Fit Plus even though he already has Wii Fit but this has some new games on it. Some of Alex's favorite games for the Wii include: Wii Fit , JumpStart Escape From Adventure Island, and the Wall-E game. I have found that many children with autism absolutely love playing on the Wii. Read our story with the Wii here.

Alex also really loves his Nintendo DS Lite. Last year since many people were at a loss on what to get for him for his birthday/Christmas I suggested Toys R Us gift cards. This way he could go and pick out the games/movies that he would like. He specifically requested to get a Nintendo DS Lite and picked out a blue one that he paid for all with his own gift cards. It was a good learning activity for him to go and pick it out, and interact with the cashier (they keep them behind a locked counter). I showed him how much it cost and how much he had in gift cards and we did the math. He knew that he could get 1 thing - the DS or a lot of other things and he chose the DS. I think I ended up covering about $10 of the price (tax and warranty etc) but it was well worth it. The DS has proved to be a good thing for him to play with when we are in situations where we have to wait. Waiting is so very difficult for children but especially so for kids with autism. Since he had outgrown most of the games for the Leapster, the DS is a good choice with a lot of titles to choose from. Alex really wants the Ice Age: Dawn of the Dinosaurs game and the new Cooking Mama 3: Shop & Chop.

In summary:
I hope that this longer than normal blog post has provided insight into the gift selection process for a child with autism. Just like any kid, my son has his likes and dislikes. In some ways he is more discerning and picky than your average child, but in other ways he is totally chillax and nonchalant. We don't have a 'holy grail' item this year like we did last year with the Pixar Lamp. Which, while it caused a lot of pre-holiday stress last year it was something that I don't think I'll ever forget this letter to Santa.

Related posts:
Featured Gifts For Children With Autism

Best Gifts for my Child with Autism

Consider the Nintendo Wii for Kids with Autism


11.18.2009

My GFCF adventure : Thanksgiving Feast for One

A memo came home from school that the kids were going to enjoy a Thanksgiving Feast. Since I knew that the foods that they would be eating would be loaded with gluten and dairy, I asked my son's teacher for a menu and stated I would be sending my son in with his own food. By some miracle, she gave me a list of the foods that they'd be eating and not surprising it was the usual thanksgiving fare of Turkey, Stuffing, Green Bean Casserole, Mashed Potatoes, Gravy, etc. The festivities were slated for next week. I had begun to research and ask my gluten free peeps on twitter for help with recipes and ideas. It is tough because I want to make him food that is comparable to what the rest of the kids are eating but I also don't want to make things that will definitely go to waste as they are not in his repertoire or even close to it. I figured that I had the weekend to get it all put together and maybe even trial a dish or two.

Well, the kids took a shopping field trip today to Costco to pick up supplies for the meal. Surprise Surprise, a memo came home today and stated that the feast was moved up to tomorrow. This came home in my son's backpack and he gets off the bus at 4pm! The health food store closes at 7pm unless I want to trek up to Whole Foods which is 40 or so minutes away.
Lucky me, I got to load both kids into my mom van and head to Brick Health Foods in order to get everything that I needed and couldn't pick up at Stop n Shop - we went there too.

I have to presume that everything the class is eating is off limits not knowing how or who prepared it. They are having Chicken (instead of turkey), Stuffing, Mashed Potatoes, Green Bean Casserole, Dinner Rolls, Pumpkin Pie.

Under very last minute circumstances, I put together the following for Alex:

-Cornish Hen (1 pound size) with an orange glaze. I guess it looks kind of like a tiny turkey, right?

-Green Bean casserole with Road's End Organics Gluten Free Shiitake Mushroom Gravy Mix. I couldn't think of anything comparable to the crunchy onion rings or chow-mein noodles that they put on top of this casserole so I'm skipping it. I don't think he'd eat eat that anyways. The green beans that I used were from the organic vegetable co-op that I belong to.

-Mashed Potatoes - I had a bag of potatoes already and I used the trusty stick blender and some vegan spread, rice milk, salt and pepper. They taste pretty good. In a pinch, try the Edward & Sons Home Style Mashed Potato Mix which is organic, gluten free and you make it with your own dairy subs.

-Rolls with butter - I let Alex pick at the store and he chose Gillian's Foods Gluten-Free Plain French Rolls (frozen) over the Ener-G Foods Tapioca Dinner Rolls. I am packing a small container with some dairy free "butter" in it.

-In lieu of cranberry sauce - I'm sending in some pink applesauce. This is applesauce that I made for the kids with apples, pears and plums cooked down on the stovetop. I'd already had this done and made from a couple of days ago so this was quick and easy.

- I decided to skip making stuffing since I just can't see my son eating it and it would be an awful lot of preparation and wasting expensive gluten free bread. I decided to send in an old standby which is gluten free Penne with Chreese sauce on it. Alex loves his GFCF Mac & Cheese! I made up a batch, served him some for dinner tonight and the rest I packaged for his "feast". I figure that if he doesn't eat anything else - he will eat this mac & cheese.

- Last but not least, the Gluten Free and Dairy Free Pumpkin Pie. Did you know that Libby's Pumpkin Pie Filling is gluten free? You can also get whole pumpkin pies that are gluten and dairy free from Natural Feast. Alex won't eat pumpkin pie, but my husband should be happy.

Ok. So - no joke, my son has 8 different plastic containers to bring in - not including a couple of zip locs and a drink (no mention of what drink she has and its probably something toxic). Looks like I'll be driving this in to school tomorrow.

And, after all that... Will he eat it?

Gillian's Foods Gluten-Free Plain French Rolls/Hamburger & Sandwich Buns

So, my kid is getting glutened at school

A little birdie let me know that they had some problems with my son's teacher last year with regards to their GFCF child. I considered myself warned and approached it head on. My son has a whole section in his IEP regarding diet and instructions that he is not to eat any food that has not been provided from home. I am "that mom" that gets up and makes a hot lunch in the morning for my son every day. On a very rare occasion my son gets a rice cake sandwhich but that may be only about 2 days in the month or on days they are taking a class trip and won't have access to heat up his food.

I met with his teacher the first week of school and I sent in extra snacks for her to keep on hand for him. At Back to school night she mentioned that the kids would be doing some cooking projects. Alex loves to cook and help in the kitchen, so I told her I was fine with him helping (he isn't a snacker along the way) as long as his hands were washed good afterwards and he didn't eat the food that they made. I requested that she let me know the day or so before hand that they had a food project coming up and I would send in a finished product so that he could make with the rest of the kids but then enjoy his own 'safe' gluten and casein free version. She agreed to do this and I was feeling confident that things were heading in the right direction.

Over the month of October I noticed that my son was coming home from school and acting out. His behavior was not 'normal' for him and he was reminding me of the pre GFCF version of my child that was difficult to manage. On a few occasions he spent abnormal amounts of time in the bathroom and kept telling me that 'he felt sick'. I mentioned a few times to a couple of my friends that I was feeling like he was getting glutened. The thing is that I'd ask Alex what he ate at school and he wouldn't be able to answer me or give me any info to back up my theory.

Then, a note came home from school from the teacher asking parents to fund or supply a cooking project. The note boasted about how well the kids were doing in the cooking program and how much they loved the cooking projects that they completed together from start to finish. She shared how proud she was that all the kids tried the final product because she knows how picky some of our children are with food. She shared that so far the kids had made: English muffin pizzas, grilled cheese, and pancakes to name a few things.

As I read this letter my eyeballs about popped out of my head and I was ready to be sick. All of these foods are Gluten, Dairy, Gluten, Dairy, and some more gluten and dairy! She had not contacted me ahead of time to say she was making a project with the kids - because if she had these could VERY EASILY have been sent in by me for him to safely consume.

So I decided to ask my son about this, knowing that full well he might not tell me anything. I asked him if they made pizza at school. He says yes. I ask if he ate the pizza at school. Again, Yes.

Of course, I can't really back this up with proof but yeah.... I am quite certain that my kid has been getting glutened at school. And, I'm mad.