Nicole Katzman’s book, Nathan Blows Out the Hanukkah Candles brings together various themes related to the holiday, family, acceptance, and autism. The book is about a boy named Jacob who loves his brother Nathan. Nathan has autism, and when Hanukkah … Continue reading
Our Disney trip was fantastic! The first 3 days at the Wilderness Lodge was a mix of pool time and park time. For this trip we didn’t rent a car so we used Disney transportation exclusively and even this aspect went smoother than expected. I am not much of a “bus” person but Evan did great. The parks weren’t real crowded but busier than previous October trips. Cast members said there was a large amount of people from Indiana due to the extended fall breaks from the new school schedules.
The replacement system for the Guest Assistance Card, the DAS (Disabled Assistance System) worked quite well we thought. Basically it is a revision of the GAC in which we get a return time for the attractions instead of having to wait in the long line, as this would not really work with Evan. He can usually tolerate a wait of less than 20 minutes if he can stay in his stroller, a little less without the stroller. The new system requires a bit more thought to maximize our time without causing adverse effects on Evan. We talked with quite a few other groups with special needs and they also thought the system was a good change; if change needed to be done.
We followed those 3 days with a 7 day cruise on the Disney Fantasy. Awesome ship and a truly fantastic cruise! The ship is obviously very kid-friendly but the staff went above and beyond for Evan. Our server even had food Evan would eat sent to their private island Castaway Cay. We cruised with 10 other special need families through the Autism on the Seas organization. That is us on the Fantasy’s center staircase. The therapists were incredible and helped make the trip a very memorable vacation. Evan even went in and swam in the ocean. Never happened before! If that wasn’t enough, the therapists also provided some much needed respite time and they even had a special meeting with Mickey Mouse for our group. Everything was incredible!
The end of the vacation was back at Disney and a continuation of the fun and excitement of the first 10 days. A great trip, unfortunately all good things have to come to an end. This was no different-
Now it is back to the real world which includes work, therapy, trips to the gym and continued struggles with the future and what it may bring. We are appealing an insurance decision so we are very concerned on what the future may bring. Glad I don’t have autism as the anxiety would be way too much to handle. Wish us luck! We may need it!
Awareness is the Key!
By: Jim Monroe
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
I am Jim Monroe—the proud parent of a 7 year old non-verbal Autistic son. I am not an expert by any means about Autism or in childcare but feel I have a lot to add which would help with the overall awareness of Autism. My son, named Evan is almost a text-book case as he had some, albeit limited, words up until 2 years old and then the words basically disappeared. Other developments were late in starting as well. He loved to spin and would flap his arms or clap when excited. Doctors were weary of calling it Autism but finally when he was 4 the diagnosis was confirmed.
Evan was on the spectrum! We were ecstatic to finally have the diagnosis so we could then start treatment. The treatments are varied; some related to medicine; some related to food intake; along with Applied Behavior Analysis (ABA) which is the choice of treatment we chose. For as many “causes” that we hear about, there are just as many “solutions” and choices.
Evan has been in an ABA center for 8 hours a day, 5 days a week for over 2 years. Results have been very good. Evan is much less anxious and frustrated now then he was. Vocabulary is still really not evident but he can communicate better than most people by using available software on his ipad and ipods. Not everything is successful, but today is usually better than yesterday. One day at a time, one challenge at a time!
We tried PECS and signing but have had exceptional luck with the electronic methods. Is it right for everyone? No, of course not as just like the saying, “if you have seen one child with Autism, you have seen one child with Autism”.
Do we have a pity party sometimes? Of course we do and for all the families facing this diagnosis, it is not the end but truly an unexpected beginning. Evan teaches us every day and he teaches the people around him as well. My hope for this blog as well as the way I run my life is to try to make as many people aware of autism and how it affects us 24 hours a day, 7 days a week and 52 weeks a year. No vacations from the spectrum.
Awareness is the key! Whether it is for the father at the “Y” who couldn’t answer his son’s questions after he interacted with Evan; or my own brother in Phoenix; even to neighbors and their kids, awareness and knowledge of the Autism Spectrum is extremely important and desperately needed. Daily events can be widely different from one day to another, even the same events can illicit a different response.
Future blogs will talk about potty training, haircuts, nail cutting, traveling, dining out, throwing themselves down, clapping, Disney World, politics, insurance issues (oh what a nightmare), and the ups and downs of daily life. “Normal” people may not understand that something as simple as a haircut or a short walk in the mall can be very traumatic to kids on the spectrum. That is going to be a blog soon as some actions can be misconstrued as “bad behavior when in reality it is just the mechanism.
Let me know what you have an interest in and I can talk about it=== We are in this together and together we will be successful. Awareness is the key!