Grey Zones

I am not more than ever convinced that a lot of people do not get the help they need because they fall into gray zones.  There are undoubtedly a lot of programs out there to help people but each program has restrictions in the demographic they can help.  I first heard about this when I was doing a sociology project on homelessness.  When I asked the local homeless liaison officer at the police station what his greatest frustration with the system was he brought up gray zones (though not in that phrase).  For an example, he said that if I came up to him saying I might end up homeless as a single young female without children that he would not be able to help me.  He said if I had kids, was a battered woman, a veteran, or any other list of things he might be able to help me but as I was presented I wasn’t “bad off enough.”

As I stated in yesterday’s post I recently experienced this with my own son.  We have hit a rough spot with him and as a consequence financially.  When we reached out for help we bounced around from one program to the next and even those programs designed to help autistic children said he was “too high functioning” or had a waiting list over a year long.

Today after speaking with a friend and though I will not share her experiences her she is having a similar issue with her own child.  I can say that the issues are severe enough to warrant intervention and help but all the programs out there they do not qualify for based on restrictions (including some they would qualify for if her child were a year older.)  Now I am pulling out my bag of resources to see if I can help them when I failed to be able to help myself.  That is usually the way though, you can help others a lot better than you can help yourself.

Finding Focus

Despite my best intentions, my work on this blog has been non-existent.  My son went through an amazingly challenging year with the school system and we are just now getting to the point where we are finding our footing again.  Now that things are getting back into a better rhythm my intention is to start incorporating this blog into my daily routine.

The one thing I learned this year was just how lost in the system families on the spectrum can become.  I know the system and work in it and yet still I found myself desperately trying to seek a safe harbor.  There are issues with “grey zones” where people despite their best efforts cannot get the help they need.  One project I will be working on is the development of a book for parents and teachers on ABA Therapy.  The book will focus on explaining what the therapist does and ways to support the therapist.  It will also have a section to help those who cannot get treatment in their area develop a plan they can do independently until things are improved.

The only exception to the effort to do a daily blog will be over Comic Con.  However, since I was unable to get babysitting for 2 of those days my son will be going with me!  This means I can talk about the services and things available at the event.

Disney and Autism

I have had the privilege of going to both Disney World and Disneyland.  No, I do not have a lot of money I just happen to have family in both locations.  Disney used to allow people to go straight into the fast track lines if they had a disability.  Unfortunately, this was abused a lot with people doing things like renting a disabled person to tag along with.  The new system has you go to an info booth (unless you have mobility issues then you can do this at the rides) and let them know what ride you want to go on.  Cast members give you a return time based on the length of the line and you return at that time to wait in a short line.  This system can be used paired with fast track tickets, and if you are using the return time you can wait in line for another ride.  It also allows you to sign up from any info booth in any of the parks so a lot of the wait time is cut down in the walk from where you are to were the ride is.  The process requires going to City Hall and registering every 2 months.  Disney never asks what disability your child has or ask for proof, but they do scan the tickets of your child and those that use the return time with you to watch for abuse.

Staff at the info centers are extremely helpful, and can be used for learning opportunities.  My son is verbal, so I went up to a cast member and showed my son the name tag and explained how he could go up to any person with a tag like that if he got lost and tell them “I lost my mom”, and they would take him to City Hall for me to find him.  It took him a while to understand, first he thought he was suppose to go straight to city hall, then he thought he was suppose to go to the specific person I pointed a name badge on.  Since tickets had to be scanned at every ride we used return time for I pointed out the name tag and explained again with every person until he generalized going to find someone to cast members and not a specific person.  Everyone I used as a display person was very understanding and helpful in being used as a prop.

During our Disney World trip our son was 4 and had a lot more problems than he does now.  We purchased a backpack carrier from kindercarry.com to assist us when he was having issues and boy did we ever need it.  He got to walk on his own but if he started to throw a fit or we needed to move him quickly because of problems putting him in the backpack made it easier.  This was a two person job, one person to put on the backpack and the other to put our son in it.  For him the compression alone was a great help!  The down side was staff often did not know how to handle having a child in a backpack carrier and many rides have height requirements.  For one ride we have to take him out 3 times, once at the entrance, half way through the line, and right before boarding.  This doesn’t seem bad until you consider that it was a long walk, but a short line so it was only a couple minutes between taking him in and out again. On the whole though the carrier was a huge help, especially at the end of the day when normal children get overloaded and we still had to travel from the park back to our rooms.

The Disneyland trip just happened recently and he is now 7.  Fortunately, disney encourages bringing and using portable entertainment systems like the DS in order to help children with sensory problems handle the lines.  Jared brought his 3DS and was so enthralled with getting more people on his street pass (you collect things as you pass other people in real life with a 3DS) that he was able to tune our the rest of the world.  He does better when we are moving so the only time it felt like he wasn’t a normal child were those times when the line was to short to give him the DS and to long for him to handle.  There were a lot of issues with holding hands making his hand sweat, which made him try to avoid holding hands.  The large crowds make it easy to loose someone, so vigilance is still important.

What tricks do you use to get through theme parks?  Do you have experiences in other theme parks?  Please leave your thoughts in the comments below and don’t forget to subscribe!

Common Core and Autism

Autism Science

I will need to look up the reference, but there was a study done that showed individuals with autism preform better in mathematics.  The study showed that the individuals with autism use more of their brain when they are doing math.  Specifically, they used areas of the brain typically devoted to facial mapping.  Being better at math is not necessarily a bad thing, and as a parent I love that while my child could have problems with making eye contact at least he is getting something else that is good in exchange.

Common Core

As someone who struggles with math I was one of the first people to go “what the ____ is this” when I saw common core strategies.  As someone trying to work toward their Ph.D. I had such problems with math that I needed to resolve to be successful I decided to start all over.  Basically, I was convinced I had missed the secret “rosetta stone” of math that would explain everything.  Blew through first grade, second grade, but this time I was learning it with common core.  The way I was brought up you were told how to solve the problem, but not why it worked that way.  Some people can do this fine, but the people who are really good at math understand why it works and find the way that works best for them.  The moment of clarity between understanding those who were good at math and people like me came when I had the “ah ha” moment and excitedly told my husband “Oh my God, I get math!”

As I explain to my husband (autistic) this new amazing understanding of how math worked, instead of just how to solve it, his response to me was “ya and.”  I was thrown for a loop, “What do you mean, ya and, were you taught this in school?”  His response floored me, “No, I just figured it out for myself.”  The genius math autistic husband admitted it was never something he was taught in school he just saw the patterns and figured it out.

The Connection

Now my husband had tried to tutor me in math before, but it was such common sense to him and his communication skills not being the most refined in the world this was completely ineffective.  When I showed him some of the common core math sheets my son was working on, and those I give to my older students, for the first time he could not give a good answer to a math problem.  Why?  Because common core requires you to learn how the engine works and then explain it back in words.  They require a student to prove they understand the relationship in a linguistic format.  Since most children with autism have problems in this area, suddenly an area of academics they did amazing in suddenly becomes a challenge.

For example, I just asked my husband why 5-2=3 in words.  His answer was a general restatement of the problem.  “Well, if you have 5 and take away 2 you have 3 left.”  When I tried to get him to explain it in a different way he couldn’t.  Finally, he resorted to saying “We decided that the word five is a symbol for a predetermined amount…” at which point I cut him off as I saw him struggling.  I then said out loud a verbal way to explain why 5-2=3. “Five is a number representing a fixed point when you travel two units away from five you end up at three, because it is an expression measuring the distance between two numbers.”  I would never expect a elementary student to say it that way, but me and my husband are both adults so I gave a more complete answer.  Once I said it he agreed, but it was something he knew as images in his mind and he was not able to come up with the words to express the concept.

Those with autism often think in pictures.  Normal people fall on a spectrum between visual and verbal thinking.  Personally, I am mostly all verbal if I have to think in pictures I close my eyes, furrow my brow, and need total silence and concentration to be able to do it.  For me hearing what it means in words completed the gap that was missing for me.  However, what happens to these autistic children who don’t think in words.  It reverses the problem, and suddenly those who frankly may be the best at math are getting worse grades in math because they are unable to verbalize what they already know how to do.  It is like taking a master wood worker and failing him at a wood working class because he could not put down in an essay how to wood work.

What to do

This is the biggest challenge as a parent and as an educator.  Common core is new, and it has excellent results with the majority of children so it is probably going to be around for a long time.  Parents do not always understand it, and often teachers don’t because it was poorly implemented and when you don’t understand something it is hard to fight it.  Worse, schools have to cater to the average, so these policies become the standard because they work for the majority.  As a parent you can talk to your child’s teachers but the teachers have to uphold the standard.  It maybe hard, but the best thing a parent can do is to take the time out to work with their child on developing that language.  Work with specialist in this area that might be able to help your child like your ABA therapist.  If you see your child is good at math but doesn’t have the words to express it bring it up and get it as a focus area on their IEP.  It is really good to do this as soon as you see this is a problem to so it does not become a problem that gets progressively worse.  Also contact people in charge of educational reform.  I do believe common core is a great thing, and with the aversion to common core being so wide spread make sure your letters stand out.  Bring up things like having research done in alternative testing criteria for students with language difficulties, or having more research done in high-functioning autism and common core to find a workable alternative solution for the problem.

Marriage

Being married to someone on the spectrum can take an unbelievable amount of patience and understanding. Worse, a lot of our current generation of children will grow up to be adults that have trouble forming lasting relationships. The challenge as the spouse is very little information and help currently exists for marital problems that result as a product of ASD partners. There is a lot of work that has to go into finding a way to meet half way between the needs of the two partners because the needs of one can quickly infringe on the needs of the other. For example, when the neurotypical spouse has a terrible day and end up overly emotional and need their partner to be supportive. The ASD partner might not know what to do at best or worst get overstimulated by the emotional expression of their partner, resulting in little help at best or at worse increasing the emotional stress.

In a therapy meeting once I was told that my spouse was autistic, there was nothing I could do to change it, and I just had to learn to accept it and deal with it. This is not the whole truth by far! Yes there is no cure for autism and you can’t change your partner, but you can get creative and change the environment. Just because a road is blocked to a town does not mean there is not another route to meeting your partner half way. Finding the route isn’t easy. Normally when working on a mutual compromise you can both guide one another because you can put yourself in their shoes. You can’t always do that in this case, and worse many people with ASD do not always have the ability to determine what will actually work for them. As a couple you have to become researchers and experiment on different ways to make it work.

That is what this part of my blog is about. I will share personal experiences of challenges face in my own marriage and the ways we have or are trying to resolve them. Readers are invited and encouraged to ask questions or share issues they maybe having. If I have experienced something similar I can share what I used that worked, and if not I can bring up some suggestions based on experiences and/or research that may help you evaluate your own position from another perspective. This is a place to talk out problems and explore solutions in an environment where people can understand because they have been there. Everyone is welcome to share, however, this is a place for coming up with workable solutions and sharing problems, if you want to blame your spouse save that for venting time with your