I have been weighting the pro and cons about telling Eli he was diagnosed with PDD-NOS but feared that he was not yet mature enough to understand. Lately he has been hinting to me that he knows he is a bit different and has engaged in conversation about how his classmates treat him like he is an odd-ball. My first thought was that kids can be mean and wondered if it was just normal behavior for kids to have their little friendship groups or if it was the Aspergers Syndrome causing the problem.
Then I thought about it, Eli does not have many play dates with his “friends” at school. Why is that? Do other kids hang out with their friends at age 7? Eli goes to his friend next door often, and actually engages with us to ask permission, but I would love to see him running around outside more, playing with his friends and having fun. Instead, Eli finds his comfort in the computer, his collection of cards and his brother.
There have been a few times I wanted to sit him down and tell him he has Aspergers. I question if he can handle the diagnosis and if it will depress him. Part of me wants to let him know so he can fight the internal struggle to push comfort level so he can learn to adjust better.
I am not sure I know the answer, but I do know this. It gets harder as they age. Eli is 1.5 million times “better” then he was years ago, but he still has Aspergers. He has to be told. Maybe this is the year.
Recently I have been asked by a bunch of parents to create a forum on RaisingEli.com that will allow parents to interact with each other. Let’s face it, if you are here you probably have a child who is on the Spectrum or currently being tested. You are probably scared and are looking for hope.
The goal is to provide a place where you can ask questions of each other and get into conversations geared towards helping you the parent, and your kids. I hope this works and that it becomes a staple of your parenting life.
I have also been asked to open up subscriptions to the blog. In other words, in the lower right corner of the main page you can subscribe to the content. Be assured that your email address will always remain confidential. If you want to be notified about new posts on the blog then this is the best way to have that info emailed to you.
So please check out the forum, and if you have any problems reach out to me. I am currently beta testing the forum idea and would love feedback.
Eli is driving me crazy lately. I almost believe that as soon as the Aspergers Diagnosis was written down that he suddenly has every single trait of an Aspergers kid running on full steam. The most annoying part of his behavior of late is his literal interpretation of everything that you say or do. If you dare say, give me two minutes Eli and I will get you a snack, he counts out the seconds. If you say the movie starts in five minutes it better start in five minutes. Any and every situation where something is defined or measured there is not guestimation, estimation or exaggeration allowed. It is literally. If you say, “Eli, you are killing me” he actually thinks he is killing you. By the way, never say that to an Aspergers child because he wouldn’t stop saying he was sorry for killing me for hours. Half a day later he asked me when I was going to finally die because he was killing me. You would think that would be considered a sense of humor, but not really. He was pretty serious.
Eli is whining all of the time as well. He complains that he never gets his way and that he always has to do what we tell him. I find that pretty normal but he takes it to an extreme. I blame a lack of strict schedule that is causing all of this. It is summer time and he is off from school. I fear 2nd grade is going to be a challenge.
On June 22nd my family left for our first vacation. Our destination was DisneyWorld and we had some advice given to us that really came through and I thought I would share with the masses (just in case you didn’t know).
The first thing you should know is that Disney supports Autism. They have a special needs pass that you can get at any guest relations desk at any of the theme parks that will allow you to SKIP THE LINES. Now, this of course can be abused by people so we had brought a note from Eli’s doctor showing his diagnoses and how standing on 60-75 minute lines would drive him (and us) crazy. I have to admit I was completely against getting this pass because I thought Eli could handle it, but I was wrong and this pass proved to be invaluable.
At almost every ride Disney has three lines: Regular, Fast Pass and an alternative entrance. If the line was long we simply showed our pass and our entire party was either put in the fast track line or moved to the alternative entrance. We waited literally at the longest 20 minutes to get on any ride. This was amazing. There were no meltdowns, no whining and no panic attacks. Eli simply enjoyed the day.
If you have a special needs child, Disney will help you survive the park and lines. All you have to do is ask for the help. As for the trip so far, we are on day 6 of 9 and Eli has been a roller coaster junkie. Nothing phases him, and it has been amazing. He has done all of the big rides and spent a day at Typhoon Lagoon. It is funny because at one point in his life he had such an aversion to being splashed or getting wet and now I couldn’t get him out of the wave pool and slides.
Eli has been re-classified and diagnosed with Aspergers Syndrome. This is both terrifying and expected but a new chapter in Eli’s life. To be honest, I really have no experience with the disease so now it is time to educate myself. The same questions and more come to my mind, the same fears and despair enter my mind. Eli is wonderful, and I wouldn’t want him any other way but yesterday at the field trip he took (in which I chaperoned) was an eye opening experience. The teachers FAIL to communicate the true nature of the amount of time Eli spends self soothing himself by stimming. I also watched him socially interact with some kids and although most of it was appropriate there were times when was unsure of himself.
All of this is very depressing and today will start my re-invention of being a parent to a special needs child. I need to learn the in and outs of this disorder and understand how I can better help Eli adjust. The main question now is do I tell Eli that he is an Aspergers kid? When do I tell him? and how?
Eli has a very important day today. He is finally being tested by a neurologist to see if we can get a proper diagnosis. PDD-NOS has been pretty close but his academic prowess and intellect far exceed most kids and his IQ is off the chart. We have been thinking maybe he has Aspergers and if that is the case, then maybe he can receive more services that will help him now and later in life.
Of course it is hard, we were elated when his diagnosis was removed and saddened to see that even though he is 100000% better than ever that he still has his issues. I personally think every kid has his little nuances and that is normal, but Eli still does not hold eye contact, although we see him struggling to maintain it and we still see him stim all the time. Eventually this will become a social problem. Kids as they get older just become less tolerant of behaviors that are not normal.
I am nervous for him, and I am scared for his future just like every parent is with a child who is PDD-NOS or on the spectrum of Autism. I wouldn’t trade him in for all the money in the world. To me he is perfect, but will he be perfect to some spectacular young lady one day? Will he be able to get a good job and make a good living? Will he have friends? These are the questions that haunt us all.
On a brighter note, Eli went Kayaking with me this weekend. It was his first time out on the water and he had a blast, he helped me paddle the boat and rescue his mother who rolled her kayak and went into the drink. He was a champion and he didn’t let the water and get splashed bother him. This is a great thing since sensory issues plague PDD-NOS kids a lot.
Eli’s diagnosis and EIP was removed midway through Kindergarten, but issues still remain. The school system believes Eli is fine because his disability does not negatively affect his abilities as a student in school. Now that Eli is in first grade he is doing a fantastic job but the stim and social issues continue. Clearly Eli still needs help so we are about to take on the school district and try to get him additional help that was stripped from him going into first grade.
Our goal is to have him tested again to see if he is classified with Aspergers Syndrome. Eli fits the bill with all the classic symptoms and he is now old enough for that diagnosis (six is the earliest a child can be diagnosed accurately with Asbergers). Our goal is if there is help he can receive, then we want that help. It is all about his future. We want the best for him.
I will let you know what happens.