This post is directed to those of you who have children with special needs who are either on government assistance right now or are under the belief that when your child is older and you are no longer on this planet that the government and/or our society will be there to take care of your child.

 

In a nutshell, I have been going through a government assistance nightmare for the past three weeks in regards to my son’s benefits. And the issue is not yet resolved. I am hopeful that I will get it resolved because I am relentless. Really relentless. Supposedly, Blake has a support coordinator to help with the issue. Uh huh. Well...let's just say, being polite, that she did her best, but her best wasn't near good enough.

 

So that is where I come in. Mrs. Relentless. Since November 1, all Blake's services have been terminated because someone forgot to send me a letter to tell me that Blake had to reapply under a new program. So they take responsibility. But they don't take action. They accept that they dropped the ball, but this admission does not make them snap to it as you can see. And the biggest problem is that no one knew what to do for like two weeks. So I was calling every agency. Every state agency. Every federal agency. No one knew what caused the issue or what to do to solve it. Then just by a luck of the draw, I sort of figured it out. But then, I guessed on how to solve it, and I was only half right. Well, in this situation, being half right is like being almost pregnant if you get my drift. Yep-you guessed it. The pieces just didn't come together.

 

Well, today, we seem to have 80% of the pieces in place. But still no benefits. Maybe tomorrow I can find another puzzle piece and then the next day...who knows? It's an amazing journey-one which caused me to end up in the fetal position on the couch in the middle of the afternoon watching TV.

 

Dealing with the government and having to handle the fact that Blake has no benefits is part of the frustration. But the bigger part is the fear that no one will be there to fight for him when I'm old or dead. There is no Mr. Relentless or Mrs. Relentless Jr. just waiting to take over. Nope-there is going to be a better solution. The only one I can think about is the planned residential community. At least there will be a team of professionals who are there to handle these types of problems if they come up. So I am back at it. Working with a great group of parents trying to develop Mariposa Village here in Florida. If you live in Florida, you can join us for a webinar meeting Wednesday evening November 20 at 7PM. Email Debbie at dlawrence@mariposavillage.com, and she will send you the directions.

 

Meanwhile, check back with our website which is under construction right now, but should be up by November 21: www.mariposavillage.org

 

Take care and wish me luck!!

 

Valerie

 

Is it really 2013? Disney Discontinues Special Needs Access

Back in 1999, my husband, Garth and I started a non-profit association called the National Autism Registry (NARY). The sole purpose of this organization was to secure the ability for individuals with developmental issues to access the community. Our first endeavor, which was an idea that emanated from a personal experience that we had on a vacation, was the development of the original NARY card. This card was basically the size of a business card. It had the individual’s name on it and identified the person as having autism. (Later on, we had to take off the name as we had such a huge request for the card). It also contained a paragraph requesting that the individual and their party be allowed to cue the line. It explained the reasons why the individual with autism had trouble with waiting. The family was to present the card at restaurants, establishments and other community-related places. The secondary benefit of the card was autism awareness. Fourteen years ago, autism wasn’t the buzz word that it is today. We were still at the point that we needed to educate the general public. So, the cards also were an avenue for that. Many families reported wonderful results, though we had some issues that needed to be dealt with. We sent out over 7,000 of these free cards worldwide. (Later on the second NARY card was developed, which was used to explain why our children had meltdowns.)

Well, then families began asking about Disney. So we approached Disney, and after speaking with certain individuals, they told us that they would allow individuals with autism to cue their lines as long as they brought a doctor’s letter verifying that the individual had a disability that prevented them from being able to wait in long lines. So, the policy began. It was amazing. For the first time, many of us were able to bring our children to Disney and have a successful experience. Through the years, I believe that Disney became lax in verifying the disability or the HIPAA law now prevented them from doing so.

It’s not surprising that people began to get wind of the VIP treatment individuals with special needs were getting. And I guess, they are jealous. Yes jealous!! Can you believe that the general public is jealous? Of us? You may think it is resentment they are feeling, but I totally disagree. It is jealousy pure and simple. There they are with their typically-developing children, waiting for the rides, sometimes for a long time, often in scorching heat, and our families are being escorted into the special area inside the ride, where it is cool, and then being put on the ride quickly. Then they go to the next ride. And there is another one of “our” families feeling very entitled and being able to just show their pass and then get escorted into the special area by one of the Disney personnel.

God forbid there should be some sort of benefit to having a child with autism.

So some people who did not have issues themselves or a special needs child forgot about Karma. They decided to rip off the system. They tried to figure out how they, too, could be a “caregiver” for the day and access the special needs area at Disney. Then Disney started to have public relations problems. Not only were there tons of people who had legitimate disabilities and needed special access, but now they had a few scammers. Honestly, do you think there are tons of people who are “hiring” the handicapped to take them through Disney? My guess is that there were a few bad apples, but in general, there are really a lot of people who legitimately can’t wait in line due to medical disabilities. So now, regular people, those without special needs family members and do not believe in scamming, are having to wait in line while it appears that everyone and their mother is getting in the VIP area. They are complaining to the powers that be. I get it. I really do. I see that Disney needs to handle this. The last thing Disney needs is to lose more business. The economy hasn’t been great for them. They announced this week they are discontinuing the special access pass for individuals with disabilities and requiring them to use their Fast Pass option. They are under the impression that this will fix the reverse discrimination that some people feel is going on.

So here’s the thing. They are not fixing the problem. They are creating a whole new one. Now they want individuals with disabilities to use their Fast Pass option. This is the option that they offer to the general public. It’s a great idea for people who are able to understand that you go over to the ride, get a ticket for that ride for some time in the future, and then do something else while you wait for that time. Then return to the ride, possibly still wait a bit, and then eventually go on the ride. But seriously, does that seem like a good idea for a) People in wheelchairs who already have some issues with mobility. They have to travel over to the ride, then go somewhere else for a time and then go back to the ride. Really? How many rides do you think they can do in a day? Or b) Children with autism. And even some adults. Let’s see how they do being taken over to the ride-then told they are not going to go on the ride and have to leave the ride without going on it. Then trying to figure something else to do while they are having a meltdown, because they left the ride without actually going on it. Then after settling them down, it’s finally time to take them back, which makes it look like you are reinforcing them for poor behavior after they had a mood swing by taking them back to the ride. Then having to wait a bit before going on the ride. (If you have been around a child with autism, I know you understand that last thought. If you don’t, I’m not sure you can follow it. You sort of have to be there. Sorry).

From what I am reading, Autism Speaks had some hand in developing this new procedure. Are you kidding me or what? If they did, I’d really like to know who the person was over there that came up with this idea. This is the best they could do. Huh?

This is 2013. I am really throwing my hands up in the air. I stopped making and sending out the original NARY Card in 2008. I thought my job was done. I was under the impression that our society understood autism enough that we didn’t need to constantly explain it. It seemed to me that we had made adequate headway in accessing public and private community areas. Autism has been in every major magazine and newspaper both in print and online. It’s embedded into television and movies. You would be hard-pressed to find someone these days who didn’t know someone who has autism. But this is a BIG step backwards. And it’s about jealousy. Plain and simple. We get something they don’t. You had better take this very seriously, because next it will be our child’s benefits that they are going to be jealous of. Our children’s medical or disability benefits. They are not taking the time to really look at the entire picture. They are just looking at the one thing: special access at Disney. This is really a big problem, and if Autism Speaks really had something to do with the new procedure, I’m really scared.

So, I re-thinking getting back into the NARY card business. Maybe I need to make a new card. Perhaps I need to say something like: “This individual has autism. Please do not be jealous that he or she has difficulty waiting in line and sometimes is entitled to special treatment. I would like to invite you to my house for the day. Perhaps, that would give you a different perspective. Call me.”

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Meanwhile, I hate to be "Negative Nelly" all day. Come and visit my son and I at our website, thechocolatespectrum.com. Help us raise money for autism while you shop for chocolate treats. Use code First25 to receive 25% your order. Sign up to receive free special recipes (some gluten and casein free).

The Evolution of a Micro-Enterprise

When I first conceived the idea of The Chocolate Spectrum, I really didn’t know exactly what that would entail in terms of Blake’s involvement. I knew he liked making chocolate-that’s it. First of all, I didn’t know what was involved for me let alone him. I mean a running a business, even a small one, requires many different tasks. But as the weeks and months have passed, and now that Blake is out of school, and

The Chocolate Spectrum is going to be his main activity for his life, I realized that it can’t just be about making chocolate. I now understand that Blake needs, and is capable of getting into other areas of the business.

As I have previously posted, he is able to help with the packaging. He ties the ribbons on the boxes of candy. He has always been OCD when it comes to precision of tying the bows on his shoelaces, so I wasn’t worried about the ribbons on the boxes. He likes the bows to be the same size. So job #2 has been packaging. 

This week, I introduced him to job #3: mailing packages. In this task, he is essential. First of all, I only have two hands, and a weak back. So, it goes without saying that I need a strong person to help carry all those boxes into the post office. That’s a no brainer. I guess I could get a little trolley, but who needs that when you have a strapping young fellow? So Blake gladly carried in all the boxes for me this week. What came next was a surprise. We brought the boxes up to the self-service kiosk for printing out shipping labels and purchasing the stamps. And then it came to me. It’s a touchscreen! Blake can do touchscreen. He has had a touchscreen device of one kind or another since he was eight years old. This is old school to him. So, one by one, I helped him to enter the information on the screen. It’s just a matter of following the prompts: Push “mailing package.” Touch “no” since we are not shipping anything hazardous. Enter the zipcode. After three packages, I didn’t even have to tell him each one to push. Great!! A new task and something he likes and can do with a little assistance.

There’s a moral to this story. One that is very important for everyone who has a child or works with a child who has special needs to know. All those tasks that we laboriously worked on for years with Blake in speech and occupational therapy and in school are finally starting to have more meaning for him. People ask, what is the point of these exercises and all the training? Well, I can tell them both from the point of being a speech therapist, and also as a mom of an adult with autism. Functional activities are where it is at with all of these people. Spend the time making sure your child is involved in tasks that will help him or her in their adult life as well as their childhood. Because I believe that every person can be purposeful. Every person.

Our First Week-Getting Out Those Father's Day Orders

And so it begins...Blake's first week of being a high school graduate. The timing couldn't have been more perfect as it was the week before Father's Day. This was to be our first major holiday. I did my due diligence and low and behold, The Chocolate Spectrum got a nice amount of orders for our Father's Day Assortment. Most (not all) of the orders came from people who had some sort of connection to autism: parents, grandparents, etc. And they all sent me a lovely note with the order. So sweet and so rewarding for me. But I digress...on to Blake and the chocolate.

It took us 3 days of solid chocolate production to make the products. And then, on day four, which was yesterday, we did the shipping. Day one was fun for Blake. It involved making the fillings for the chocolate. I let Blake help even though it involved cooking over the stove. This was a new experience for him. I made him wear oven mitts on his hands, which was hard for him to get used to. He put them on, but was a little uncertain if he liked them. Eventually, he got used to him. My husband was a bit worried that I allowed Blake to cook on the stove top, but I stood there the whole time, and we use induction heating, which is a lot safer.

Day two and three involved the actual production of the confections. This is where Blake excels as he has to fill the truffle and chocolate molds. Day two was his favorite day. He was busy for about 3 sold hours! I noticed that Blake does his best work when there isn't any lag time. Since we are just starting out, I don't have enough equipment to always keep production going steadily, but today, it just flowed. This works out best for him. On Day three, there was some lag time, and he wasn't as focused. (My birthday is coming up, and I've asked for more chocolate molds from my family, so hopefully for the next large production run, we can keep Blake more steadily occupied.)

Day four, as I previously mentioned, was shipping day. I honestly couldn't have accomplished this task without Blake. It really requires at least two pairs of hands. This involved a new set of tasks for Blake, so I was wary, but he really enjoyed himself. I laid out all the items in advance, and we moved forward assembly line style. This kept the flow going and the wrapping and packaging went quickly. I guess all that time spent in occupational therapy learning to tie bows has paid off, as Blake helped tie all the ribbons on the packages. Blake was a real trooper. I was thrilled. I even took him with me to the shippers, so he could help carry the boxes and that he could see that we were sending away the merchandise.

So, I'm pooped, but happy. At least I know Blake has one activity to keep him busy in his life. He absolutely showed that he can do the work. I am sure he will get better as time progresses, and he will see that he is an integral part of The Chocolate Spectrum.

The icing on the cake is that I had an opportunity to spend a lot of time with Blake this week. The bonding experience makes up for my sore back. But onward. This was a great week!

The Time Has Arrived. Blake Graduates High School

I know. I know. It's been ages since I last posted. Well, there's a reason for it. I've

been in high gear getting ready for this day. I really couldn't have imagined that the day would come, and I wouldn't have a program for Blake to go to after graduation. But the reality is that is exactly what happened. Even though I went to many meetings with many agencies in my community, no one, not one single group was willing to start a program for someone like Blake. And when I mean "like Blake," I mean someone who needs a low ratios of students to caregivers. I guess it's just too expensive and incorporates way too much time and energy to do this type of thing. So....I came up empty handed. Nothing. Nada.

Ok, so with reality setting in, I had to really look for a Plan B. I've never been one to go into denial, so a few months ago, actually back towards the end of last year, I decided to take my pastry skills to the next level, and I enrolled in a course to become a chocolatier. What's a chocolatier, you ask? No, it's not someone that sells chocolate at Disney. Haha. A chocolatier is actually someone who produces chocolate confections. Think truffles. Think bonbons. Caramels. Ganache. Fudge. All those great things. So, after graduation, I tried to figure out what I was going to do with all this new found skill set other than make all my friends and family fat. And then it came to me. Blake. Blake in the kitchen. Blake, who loves to bake. Would he like to work with chocolate? He loves to eat it, so working with it wouldn't be too far of a stretch. Now there is a lot of technical work with making chocolate confections. It's not quite like baking where you through things in a bowl and mix it up. No, it's a little more technical and a lot more detailed. So, after some trial and error, I figured out just what Blake could do. What he could excel in with chocolate production. As it turns out, Blake likes to fill chocolate and truffle molds. It is repetitious. It is visual. And he can do it. Horray!

  

Next step. How to turn this skill into a daily activity that will fill his day and make him feel productive. So a business was born. My son, Hunter, who always is good for a jingle or two, came up with the name: The Chocolate Spectrum: Creating Sweet Opportunities for Those With Autism. "Those With Autism-" You didn't think I could limit this endeavor to just Blake, did you? No No No. This has to grow. I want to create more opportunities for other adults on the spectrum. (Actually, the next job opening is for a dishwasher. Chocolate making produces lots of dirty dishes and tools. And I just can't get Blake into that task!!) And of course, we donate money from each sale to an autism charity. 

So if you want to see more of this micro-enterprise, visit us at our new website:

thechocolatespectrum.com