Wednesday, September 22, 2010

More of my favorite things...

The last few years’ plastics have been in the news and there is a lot of worry about using such plastics. The two most commonly talked about plastics are PET and BPA. According Wikipedia the plastic commonly abbreviated as PET or PETE bottles are “Polyethylene terephthalate (sometimes written poly(ethylene terephthalate)), or the obsolete PETP or PET-P), is a thermoplastic polymer resin of the polyester family and is used in synthetic fibers; beverage, food and other liquid containers; thermoforming applications; and engineering resins often in combination with glass fiber.” Wikipedia says BPA is “Bisphenol A an organic compound with two phenol functional groups used to make polycarbonate plastic and epoxy resins, along with other applications.”

With all the other toxins Autism parents have to worry about, I have myself decided to take the easy approach and to just try to avoid both. Since I am a bit of a PITA about the way my water tastes I was a little concerned about going without bottled water. I personally drink at least a half-gallon of water a day and my children drink only water when at home. We rarely have soda in the house and if we do we only have Hansen’s Natural Soda. Being the poor girl that I am an expensive water filtration systems are out of our family budget and the water snob in me says no way to tap water . So how does one actually give up bottle water without buying one of those expensive water filtration systems and without drinking tap water?

For me the compromise has been Stainless Steel Water Bottles and an inexpensive water system you can buy at a store near you.

The issues I have found after trying a few different Stainless Water Bottles is that they are not all Autism friendly. Our kids spill, chew, stim, throw, lose, have sensory issues and goodness only knows what else. I also have the other three children who worry about looks and what other kids will think if they are lugging around a bottle of water not in the latest trending bottle like Fiji, Aqua Fina, Dasani, etc. My first try out was the Costco brand water bottle, they are inexpensive and easy to purchase. They are nice because they keep the lid with the bottle by a small plastic strap. The down side is the plastic strap is a much preferred chew toy to my 9 year old with Autism. The down side for me was the obnoxious sound they made every time you tried to suck water out of them. That led me to take off the top and drink out of a hole bigger than a quarter and smaller than a half dollar. It also led to me spilling on myself, especially while on the treadmill. No matter how inexpensive something is it does still have to be practical. For me practical includes autism and gym friendly.

I was very fortunate when a friend sent me her version of the Stainless Steel Water bottle to try. The Tazzini water bottle is all that their website claims. It is “convenient and healthy, designed with busy families in mind, we created the healthiest, most-convenient leak-proof stainless steel bottle you can invest in. “

The number one thing I love is the cap!!! When closed is about 2 inches tall and 2 inches wide and 1 inch think. Number one thing, it is so far been indestructible by Austin, which is no small task. I also think it’s size makes it less likely to be lost if your house is somewhat clean. Unless it gets thrown into your toy chest, teen boy’s smelly room your refuse to enter or teen daughter’s closet, you should be ok, because it is big enough to spot under the coach and on your floor. Surprisingly despite the size it is still easy to drink out of. You just flip open the lid twists the spill proof drink port and drink. I also very much like the way the area you drink out of is shaped, so far Austin has yet to figure out how to chew on it. On most kid water bottles the top is one that you pull out and is just the right size to chew until destroyed.

I personally for me also like the size of the bottle. I generally drink almost two 16 ounce water bottles in an hour trip to the gym. The Tazzini water bottle is 24.7 ounces and will stay cold until the end. The bottle is also well designed. It is a little smaller in the middle which means it is easy to grab and grip while walking 4 miles per hour on the tread mill or running 6 miles per hour on the treadmill.

Emily the 10 year old also loves the bottle. As soon as she saw it tried to steal it for hers since it has a cool peace sign design.

The Primer Family agrees with the Tazzini website, “There are so many reasons to love a Tazzini!”

Tazzinni also won best product of the year in the Inventor’s Showcase at the Moms in Business Unite conference!

This blog went a little longer than I expected so a future blog will be on the inexpensive water filtration system that you can buy at a store near you.

Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!

Friday, September 10, 2010

My Sister's Keeper

My Sister’s Keeper in my humble opinion was an amazing movie. It was also a very emotional movie. We have another family in our community that had a child, a daughter, die from leukemia few years back. Watching this movie brought back all the emotions of watching from the outside as Michelle died. It also brought to the surface all the emotions of having a child who will have a life long disability. Honestly how do you decide who has the better life? Part of me wishes Austin had 15 years of normal, hell I would give almost anything for any part of normal. I would give up all the poop smears, the pain he didn’t feel, but still went through, the not knowing us, not understanding, the entire process of getting here to experience one day of normal, one day of Austin being a typical 9 year old. Then I have the other part of me that feels selfish. How dare I want that when there are so many parents who just wish their child was alive.

Who is right in this? Honestly no one, how can you be? It is a no win situation, all the emotions are valid and none are better or worse then the others. We are all mothers, all parents of children who need help, we are all parents fighting for our kids but what really defines who has more pain? I honestly do not know. It is like the old saying “It is better to love and lost then to never loved at all”, right? Well that would imply that the parent of the child who died was better off, but is that right? Is that correct? I will probably never know the answer and will probably always wonder.

The thing I learned from the movie My Sister’s Keeper, is the thing I already knew. A mother will do anything for her child, she will fight forever for her kid and hell has no fury like a mother scorned. I did also learn that maybe we need to listen to our children, maybe ask what they want from this life. This also leads to huge issues for me like it did for the family in the movie. No one actually asked the child who was sick what they wanted and no one asked the child who was expected to help the child who was sick.

(SPOILER BELOW: if you are going to watch the movie abort now, STOP READING NOW!!!)

I was surprised that the daughter was doing what the sick daughter wanted. I honestly thought she was doing it to just make her parents ask her, her opinion. Of course, I might project my feeling of what I think my 10, 18, and 20 year old think on to things. I am not sure they always tell me all they think on the subject. Hopefully after reading this they are a little more open to discussing it, and hopefully by watching this movie I am a little more opening to listening and hearing what they have to say.

Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!

Tuesday, September 7, 2010

Favorite New Products

If you have kids with or without Autism or pets, there are a couple of products you need immediately. The first is the Shark Steam Pocket Mop and the Shark Portable Steamer. It’s amazing what these two products can do with just a little elbow grease and no harsh chemicals. I’ve had the Shark Steam Pocket Mop for a while, but just never got around to using it regularly. The other day my sister and I cleaned my terrible tile floor by hand. I have since been steam cleaning it daily to keep it clean.

I then decided to borrow my sisters Shark Portable Steamer, and I love this one even more. It’s amazing what it can do with its triangle shaped head. Stainless steel appliances, no longer have streaks that other cleaning products left it with. The grease from my stove gone. Little hand prints or the dirt they leave on doors and paint gone! Granite counter tops clean. It is also easy to use around the edges of the toilet. It’s amazing. I want one of my own immediately. I am so in love I think I might have to invest and upgrade to their newest model the Shark Vac-then-steam model and the newest portable model and the new portable model.
This product also kills 99.9% of germs leaving them virtually dry within seconds. No need to worry about around germs, kill them on contact with the steam and no chemicals.

Amazing, I tell you!!!

The second product is Pure Ayre odor eliminator for all dogs (and people). It’s amazing and its food-grade and 100% biodegradable, so it is safe for people and pets. I have allergies to everything and this did not cause me any problems, and it smells great. The company even claim it can take care of skunk smell. If that is the case that is even more amazing.

Pure Ayre also works well with the steamers. I pour a ¼ of a cup in with the water and then steam clean the bathroom floors and no more urine smell. When you have 2 men and one small boy in the house the floors in the bathrooms need cleaned a lot. This is one thing that definitely will help keep your bathroom clean and fresh. You can also use it on furniture and carpet. If you own a carpet cleaner you can add it to the cleaning solution and use it with that also.

Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!

Monday, September 6, 2010

10 Things Parents of Children With Autism Wish the Hotel/Travel Industry Knew

As summer wraps up and the numbers of children with Autism grow, the amount of people who travel with children with autism increases. To address this issue, I have provided the following ideas that parents of children with Autism wish the hotel/travel industry knew.

1) Put some of the rooms with 2 beds on the outside edge of the hotel. This enables families to lower the risk of disturbing other guests.

2) Add a second lock to the door, as high as possible. Many of our children are unbelievably creative when it comes to escaping.

3) Add a lock, as high as possible on the outside of bathroom door. Our children are a huge risk when it comes to danger, including drowning. They also may not feel pain and could turn on the shower at an unsafe temperature. My child also loves to dump anything out that is in a bottle. When he was little he was also notorious for flushing anything and everything he could find. Adding that extra lock may cost you a few dollars, but in the long run it will save you a ton.

4) Securely attach all pictures, mirrors, and decorations to the wall. Even here in Southern California the home of the earthquake, it never ceases to amaze me how many hotels, restaurants and dressing rooms do not secure their mirrors. Our children sometimes are like mini earthquakes. Please help protect your investments and our pride and joys.

5) Offer more than one kid friendly channel in your selection. There is nothing more annoying then only having one kid channel even if your child does not have Autism. The Cartoon Network does not count as child friendly after 4 pm.

6) Provide Autism and disability training for your staff. Have a place that a disability can be noted in your hotel/airline computer. Especially in case one of our escape artists makes it out, your staff will know what may happen and which room to contact immediately. Also, have your computer software have the ability to input our cell phone number in case our children escape when we are not in the room or at the airport.

7) Have a very strict policy about not allowing the pool door to be propped open. Children with Autism have a huge risk of drowning as many are highly attracted to water.

8) Offer access to portable refrigerators and microwaves even if it is at a small service charge.

9) Have a list of local restaurants that offer allergy friendly food choices. If you have a restaurant or room service insure that they serve chicken breasts, 100%beef hamburger patties, and French fries that are gluten (wheat, rye, oats and barley) and casein (milk) free. Offer steamed veggies that have nothing on them. 1 in 150 people have celiac disease and have to be gluten free; there are many additional people who have milk allergies. Making these small changes will help millions of people not just those with Autism.

10) To airports and other places that have security check points, please have a guest assistance area that we can through security without the huge lines if we tell you we have a child with Autism. This will make body scanning the child with Autism easier and quicker. Our children often do not do well with lines, strangers, noise, people touching them, taking on and off their shoes. If a family gets chosen for a secondary check, have someone available to help families during this time.

If you the readers have other ideas, please let me know and I will add them to the list.

Until next time PITAup and do something to change the life of a child with Autism, the life you change maybe your own!!!

Next Blog topic: New favorite products.

Thursday, September 2, 2010

Back to School Night 2010

Wow, what a years’ time and a completely different mainstream teacher can make in a “Back to School Night” experience.

To protect the not so innocent, I am going to just call last year’s mainstream teacher Miss O., don’t let the “Miss” fool you she is far from young and needs to retire, IMHO. I am also going to protect the innocent and call the kindergarten teacher Mr. K and this year’s teacher Ms. C, but don’t let the Ms. fool you either, she is not that old, she graduated Carlsbad High in 2003. (I know most of you already think I am prejudiced just on that basis, but she really and truly is the real deal!!!)

Let’s rewind, back a few years to make sure you really get the significance of today, Austin’s 9th birthday and “Back to School Night” for his 2nd grade classroom.

In kindergarten, Austin was the test case for mainstreaming the “nonverbal” child who was of course nowhere close to working academically with the class. I honestly believe the team was politely trying to show us he could not handle it, but they gave it the best team effort of saying we could try it with the kindergarteners, since his goals were closer to what they would be doing academically. I think what the team missed was my wanting Austin in this class was not my want; it was really and truly what I saw as what was appropriate for him. I would sit with him at football games and I would see he would watch Emily and the other children. He would watch so intently and want to play with the kids but he just did not know what to do to play or to get the children to play with him.

Back to School Night kindergarten, we had walked in and I think we actually surprised Mr. K when he realized we were at “HIS” Back to School night. No one had really given him the heads up that a) Ed and I were PITA’s and B) we were expecting real mainstreaming, even if for our child meant the socialization part of mainstream!!!

When we walked into “Back to School Night” he was shocked. I think he thought we would go to the special education classroom for “Back to School Night”. After the normal talk about how his classroom worked, he spoke to us personally and explained why he did not have the 1st day picture of Austin up or the leaf project that had not been sent home, which he quickly fixed by handing one to us and promised they would be up until the end of September. He also explained how they were still working on all the details since Austin was the ”first” nonverbal child with Autism he had and that no one had given him direction on what was expected of him.

Bottom line Mr. K. made the effort; he made us feel welcomed and wanted, even though Mr. K told us numerous times he was inexperienced and new at this and unsure what our expectations were. We walked out of Mr. K’s class that next summer with numerous kids knowing and loving Austin. Mr. K did his part and we would see peers in the community and they would all run up and talk to Austin, even though Austin was still unsure what to do.

Last year, we walked into Miss O’s 1st grade classroom hopeful and full of happiness that Austin was going to mainstream again part of the day. I think we may have actually walked in with rose colored glasses, because I guess we both thought, that maybe Mr. K or the special education teacher from the year before would have given Miss O and Liz the new special education teacher the heads up that a)Ed and I were PITA’s and B) we were expecting real mainstreaming. (Between you and me, I think the only memo given was that we were PITA’s and they were not saying that affectionately.)

We walked into the mainstream classroom on “Back to School Night” and tried to find Austin’s desk, there was not one, because he did not have one. After listening to Miss O speak for 45 minutes on her class and how she does things, we started to explore the classroom and look for Austin’s colored person the children of the class had done, Austin’s pictures, or that Austin had even been in the classroom and that the teacher of the class actually felt he was a part of the class. We found NO clues of any of the above mention items, in our minds Austin had never been part of this class and WAS NOT part of this class. As we were waiting to speak to the teacher we were chatting with another set of parents we knew. Finally Miss O came to speak to us and the other parents, I inquired about why Austin did not have any of the above mentioned items, and she curtly told me she did not have time. When I inquired if she might be able to at least take Austin’s face picture and put one on the bodies the kids had colored so the other kids would know he was part of the class, she again curtly said she was very busy and when she had time she MIGHT download her camera, she might get be able to get to it. (Luckily for her, by this point 5 years into the Special Ed game, Ed had taught me to at least try to bite my tongue or take her head off, and I was partly in shock that someone would just come out and be that rude about having a special education child in their classroom. She was also very luck because Ed had just had his tonsils recently, because he was livid!!! Normally when we are upset the letters to the district come from me, this particular letter came from Ed the teacher and father of Austin and stressed how inappropriately she had acted.)

Unbeknownst to me at the time, the non-special education parents we had been speaking to had a conversation about this after they left the class. Husband, who really had no knowledge of Austin expect a kid named Austin had Autism and was his son M’s friend from kindergarten, says to his wife. “Isn’t Austin in the class? Why didn’t he have a desk or any of the other things M had?” Wife says to husband, “Yes Austin is in that class and when I was asking Miss O why Austin did not have a desk or name tag, Miss O said she was sure where he would be in the class or what he would be doing.” My point of this part of the story is even the dad of the mainstream class could see all the glaring issues with this teacher and her classroom. So when the wrongs were abundantly clear to Ed and me, I know for a fact it was not over reacting, even though we may have;-). The mom later told me she felt like the teacher had with her actions and word said Austin was not a part of the class; she just had to have him in the class.

To make sure the story is clear, in both Kindergarten and 1st it took over a month to get Austin to even step foot into the classroom, so he also missed all the bonding and friendships that are made that can only be made in the beginning of the year. They were only mainstreaming him at lunch, which was not at all what we wanted.
I want to make it clear Liz, our wonderful and awesome special education teacher, was NOT our special education teacher in Kindergarten, and had JUST walked into this situation new in 1st grade. The plus was she had been our districts NPA ABA supervisor and was familiar with Austin, just not with the mainstreaming or the mainstream teachers.

So poor Liz, I walk into speak to her at the end of Back to School night of Austin’s 1st grade year frustrated. I did not scream, I did not yell. I did not even really cry. The tears that fell were tears of frustration. I explained calmly to her all the issues I had with Miss O and how these were the days that as a parent of a child with Autism you truly know what you are missing. I will say honestly Austin is my 4th child, I really already knew what I was missing, but I think these are the types of moments that parents of a 1st child who have a disability truly get mugged by the disability. I just got a little punch in the chest and the wind knocked out of me, but most parents wake up days later from this type of moment still dazed and confused and ANGRY!!!!
We walked out of 1st grade knowing Austin had made progress, knowing that he still had mainstream kids greeting him out of school and Austin demonstrating those skills in public, but still not sure that Miss O didn’t only know his name because of the letter the special education director got after back to school night. I am sure Miss O will never forget us, or Austin but I am sure she learned nothing from us and is happy we are now an almost distant memory.
Fast forward to today, to Austin’s 9th birthday and “Back to School” night. We walked in, immediately found Austin’s desk. When the teacher came over she said “hi” to Austin, he responded appropriately with a smile on his face. She told me how excited she was to meet us, and how Austin was already fitting in with the class (which he started attending on the very 1st day of school) and how UNPROMPTED, when his device failed he waved goodbye to the class unprompted to the class as he left his time in mainstream, earlier in the week. Ms. C said she was very excited when she was told by Beth (our wonderful 1:1) that we had been working on that skill with Austin for 3 years, I had the awesome moment to say to her,” no we have been working on that skill since he was 3 years old.” After I left I realized that is not even a skill we have been working on, we have been worked 6 years saying “hi” and OMG he said “goodbye” UMPROMPTED!!!! We just started working on that, and OMG this is huge!!!! What a great birthday gift to MOMMY and it is wasn’t even her birthday, it was Austin’s!!!

As I close this out tonight, my birthday wish for Austin and his friends with Autism and other disabilities, is to have PITA’s for parents, to have parents who listen to their guts and push beyond what anyone else thinks their “Austin” can do, because parents ALWAYS know best. I want them to have special education teacher’s like Liz and Michelle who believe as much as the special education parents do that our kids with IEP’s can and will do this, and I want them to find a Ms. C, who is the mainstream teacher who is willing to step outside her comfort zone and make it happen for a kid with special needs! If every mainstream teacher took this approach the likelihood of every child with Autism or a disability getting a job and being a productive part of society would sky rocket. The studies show for every $1 you spend on early education you save $7 special education and jail time. Our kids with special needs need as much independence and socialization, training, and as much services as possible when young because the studies show every dollar spent saves $7 dollars down the road. Be fiscally responsible sooner then later! You as taxes payers will spend for my child and all like him, but where do you want to spend it? I am voting on making him a tax payer and not a tax taker.

My goals for Austin are the same as for my other 3 children. I want him to be a tax paying citizen, I want him to be a productive part of society that is not dependent on society or at least the least amount of dependent, I don’t care if he the president of Oakley (a very Autism friendly company, that supports Austin’s favorite Autism charity or a greeter at Wal-Mart, I want him to be independent and happy. The only way to get these kids who are independent, is to give our kids what they need is time and money and that does not even just apply to kids with Autism. It takes a village to raise a child, it a takes a nation to raise a child with Autism. With the numbers being 1:110 we need this nation to step and fund the services kids need. Put the money behind IDEA to make our kids productive parts of society who are not dependent on it.

As always thanks for reading and PITAup and change the life of a child with Autism, the life you change might just be your own!!!

Next's Blog topic: 10 Things Parents of Children With Autism Wish the Hotel/Travel Industry Knew