Parents Can Be the Best Resource

parents

When autism was first recognized as a disorder back in the 1940s, people thought that the parents were to blame for their child’s withdrawn behavior. Psychoanalysts thought that cold and detached parenting was the reason behind an autistic child having … Continue reading

A Healthier You Means a Healthier Child

parents health

Children on the autism spectrum have varying levels of functioning. Their behaviors, emotions, and sensitivities are intensified; so for parents, the task of helping and responding to their child’s needs can feel overwhelming and lead to increased stress–which negatively affects … Continue reading

Awareness is Key – part 7

A quick reminder that the Autism Walk is this weekend September 28 at Coxhall Gardens in Carmel.  I will be there so come walk with Evan!  Get some information, meet with others and walk for Awareness!

We met with Evan’s lead therapist yesterday and it was a great meeting.  Evan is doing very well and it was noted in the meeting.  Karen was ecstatic with Evan’s food program.  He made it through bread in a week or so, blueberry muffins in one week and now, even after only 4 days he is actually eating a hamburger, a full McDonald’s hamburger!  He eats the bun and the burger together without any significant issues.  Karen stated that usually the food program takes much longer to achieve this level of success so we are really happy and looking forward to additional food successes.  Next up are strawberries!  This may not be huge to others that have “picky” eaters but previously Evan wouldn’t have even touched any of the foods mentioned earlier.  What do you think we should try next?  Always looking for ideas.

Looks like there are going to be a lot of changes coming in the next few weeks.  We already know that health insurance for all is required in 2014 so on October 1 the marketplace opens for registration.  This is the program that will supply insurance for those of us without it.  Healthcare.gov is the website where we will be able to compare the costs and benefits of multiple plans.  I am not looking forward to the process but at least coverage based on pre-existing conditions, excessive waiting periods and rescissions are a thing of the past.  We do have to make sure that behavioral health treatment for Evan is covered just to further complicate matters.  Definitely not looking forward to it but I am not alone in that regard.  No one really wants to deal with insurance or insurance issues but it looks like we don’t have any choice!  We are pretty much used to constantly fighting with the insurance company since it seems someone sitting in the office knows what is best for Evan.  Must be some of miracle worker if you ask me.  If anyone that reads this can help or explain it, let me know.  I am sure there are many much smarter people than I in this regard.

Another pressing issue, but maybe not as serious, is the concern that the Disney Corporation is going to change the current Guest Assistance Cards to a Disabled Assistance System.  Since there has been a lot of fraudulent usage of the GAC cards, the system probably does need to be updated.  As of now Disney has not specified what changes are imminent but the changes are supposed to occur October 9.  Right now it is all rumor and conjecture.  As you may know, Evan loves to go to Disney World and we are actually going in a couple of weeks so we will be able to get a first-hand view of the new process if there are any actual changes.  From what I have read the new system will be more like the fastpass system with some modifications.  A common misconception is that the GAC allows “front of the line” access.  This is not true as there is some waiting involved, albeit sometimes in a less congested area of the ride queue.  We don’t mind waiting and in most cases our waiting area is in the fastpass lane or in the wheelchair area.  Whatever the system changes are, I am confident that Disney will not make special needs travel impossible.  This change will be interesting to say the least.  The fact that I also help others set up Disney travel through HiHo Vacations (www.hihovacations.com or jim@hihovacations.com) just adds to the need for knowledge.  Evan has been to Disney 9 times and we are looking forward to many more trips.   I believe that Disney will continue to be the Happiest Place on Earth, even with the changes.

Awareness is the key!

by: Jim Monroe

Awareness is Key – part 6

Hello again— what a week!  Lots to talk about this week, some confusing, some good and even some great!  Pretty typical of everybody’s week I think.  Mine is nothing special.

Evan still eats bread but even more surprising is that it only took 3 days until he would eat, on his own, four of the mini-blueberry muffins.  THREE DAYS!  We would have never thought it possible yet it was.  I learned from this that anything is possible, we just have to try.  Success isn’t possible if you don’t try.  Now I sound like Handy Manny when he says, “you can’t finish a project if you don’t start it”.  His “school”, the Applied Behavior Center took a group to the zoo today for a community outing and Evan manded (asked) for blueberry muffins for a snack.  We are ecstatic and are ready for the next option:  hamburgers!

Evan started on a new medicine which is for Alzheimer patients but has shown promise in those on the spectrum to increase vocabulary.  Namenda is taken orally and he has taken it for just over five weeks and it looks like it may be helping.  Each day at school, Evan does echoic training where he is to mimic the sound that the therapist makes.  A month ago we would get positive results about 30 times a day but that number has basically doubled since.  Promising results so far but we never know what tomorrow will bring our way.  We can only pray and hope for continued success.

Great news from the doctor visit though is that Evan is now in the 5th percentile for height and weight!  That is only the second time ever that he has been “on the charts” at the same time.  He was very small at birth since he was five weeks early, 4 lbs. 11 oz., and always mirrored the chart but just couldn’t get to or stay above the line.  I don’t think he’ll ever play center in basketball; but neither did I!

Speaking of medicine, I attended a seminar about the Affordable Care Act that goes into effect in January.  Not much new information except that the website will be up and running on October 1.  Everyone needs to have insurance for next year but we just need to concentrate and ensure that Evan’s insurance covers ABA therapy; not all insurance plans or networks will cover it.  One more stress to contend with I guess.

The new magazine, Autism Companion, with Evan on the cover has done real well so far.  Lots of copies out in the public and with each and every copy mean more awareness to the viewer.  I hope everyone gets a chance to read the magazine as most of it is written by those of us immediately affected by autism.  It may be our kids, it may be our grand-kids, and it may even be us but it really comes from the heart.  There is a lot of good information that this and other magazines give to the public.  Knowledge is the gateway to awareness.

One last item for this week, I went against the perceived norm for a 57 year old accountant/college instructor and got a tattoo.  That is it above and obviously I got it for Evan!  I love it and am glad I did it!

Awareness is the Key!

by: Jim Monroe