Dec 15

As the regulars to this blog will know I have been very inactive lately on posts. I attribute this to a lot of changes in my life. I have been battling some very serious stomach ailments of late and have had a new addition to the family as well. Makenzie was born on July 12th, 2013 and is our third child. Eli who was originally diagnosed with PDD-NOS but as been re-classified as Aspergers Syndrome, Zachary who has developed quite normally and made us realize a lot about what we missed when it came to Eli and now Makenzie who is developing even faster than Zachary. We are truly blessed.

I think it brings up a topic I would like to discuss with the reading audience: Realizing when something is wrong. This is a hard topic because nobody wants to think their child has a problem or is different, and more importantly to first time parents who do not have a sibling to compare to, seeing a problem is nearly impossible. So what is a parent to do? How do you know?

I think the answer really comes with whether or not you are asking the question. The reality is if you are concerned, even about the smallest thing you probably are picking up on something that is real and not imagined. So instead of being the proud parent and dismissing it to normal parental worry start asking yourself serious questions and looking at your child with an open mind. The best thing you can do is get help, the worst thing you can do is say they will outgrow it. Let me restate that a different way: Getting help early is the best chance at your child having a normal life. If you ignore the signs, are blind to the flashing red light or deaf to the sound of developmental delay you have done your child a tragic thing.

Parents. Look at your children. As the tough questions. Get the opinion of others, and do it soon. The best bet is to go through your school system to get help. Most states have amazing support systems available and be prepared to fight for your child’s right to services. Do not reject a diagnosis, welcome it and even if they are wrong, the support only accelerates your child in the complex process of social learning and traditional education. Remember a diagnosis is sealed, and there is no stigma to it.

 

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Nov 18

one of the greatest things that Eli has done over the last few years was join the Boy Scouts of America. He started out as a wolf and has now progressed to a Bear and I see a long and happy future. So much so that I have volunteered my time to be an assistant den leader for both the Tigers (1st graders) and Bears (3rd graders).

One thing I have noticed is that scouts is a perfect setting for a child with PDD-NOS and Aspergers syndrome because it offers the child a chance to gain so many necessary and vital skills, as well as be put in a social situation where they can learn from other kids on and off the spectrum. The scout promise is simple:

I promise to do my best, To do my duty to God and my country, To help other people, and obey the Law of the Pack.

So what does this mean to the scout and their parents? It is contract that your child will never take the easy way out, they will always put in a honest days work and effort in everything they do. The scout will honor his parents, his friends, and do the right things instead of the bad things. The Scout respects all religions, and will never be a bully towards anyone else and above all be a good citizen. These lessons are enforced in all activities and sets the stage for success in the child’s life.

How does these values help a special needs child? It gives them an opportunity to learn, to be social, and most importantly to be socially appropriate. Scouts teach each other more than the parents and leaders teach. It is a very cool social dynamic. Everyone wants each other to succeed. It is pretty cool to watch.

There are some negatives of course with scouting. Some parents just don’t want to partner up with their child, and think that it is the den leaders responsibility to babysit their kids or be the only disciplinarian in their lives. I watch parents sit in the back and let their kid run around like a madman and say nothing? Why? Because it gives them a chance to relax and not be so focused on the child. For the parent, it can be a great social hour.

The great thing about Scouts is the rewarding feeling the kids have at achieving goals. Each time  your child earns a belt loop, a bead, a pin or a patch it fills them with accomplishment and pride. Something every kid enjoys. If you have not checked out your local Scouting pack maybe you should. It will help your special needs child a lot and give you the opportunity to help your child grow

 

 

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Mar 26

I have found that there are days in my life as a parent of a Aspergers (PDD-NOS) child that seem like everything is normal. You get up in the morning and your child gets himself dressed, asks nicely for some pancakes and syrup and gets himself ready for school. Meanwhile you are looking around for the candid camera waiting to figure out who prompted your child with the instructions on what to do next but then you realize, he is just doing it on his own.

I call these the normal days. The days when Eli is not flapping his hands, or crying for nothing. I wish I knew how to capture these moments so I can repeat them. Today, Eli came up to me and gave me a hug and said he loved me. I never had to tell him to do something, he simply did everything right. I loved it. Tomorrow…might be a total reversal but I will take this day and just embrace it for what it was. A great day for Eli.

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Feb 06

 

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.

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Feb 02

This question is asked of me all the time and as a Dad I completely understand why a dad would reject the diagnosis of PDD-NOS of their child. It is a pride thing and this is not an uncommon event. It happens because the dad loves his child and refuses to think there is anything wrong. This is a totally honorable notion, but unfortunately it is completely misguided when it results in the parents not being on the same page and  the support not given to the child.

I suffered with this myself. But my LOVE for my child won the day. I figured it this way. Nothing bad can come of Eli getting the kind of support the specialists, educators and therapists said my child needed. Even though at first I rejected the diagnosis, the support was only going to improve my boys life. He will be better socially, better academically and more responsible.  I figured, how could that hurt?

Deep inside I knew there were issues. I just was being a dad. My kid is normal, my kid is perfect, and my kid does not need help. Once he started getting the help I didn’t expect to see the instant results which just reinforced the diagnosis. MY KID IS PERFECT, but he has Aspergers, originally diagnosed as PDD-NOS. That diagnosis does not make him less perfect, it makes him just need more love from me, his DAD.

To the father who is not accepting of the diagnosis. Continue to deny it in your head but give your son the therapy he needs. It will not hurt him, there is no social stigma about getting help, none of the other kids understand what is going on, and your child will grow and improve in the areas he is struggling with. This is a no brainer. If you love you kid, you provide the best of everything for them no matter what. You take your kids to the doctor when they don’t have a fever, You take them to the dentist even if they don’t have a cavity. You take your PDD-NOS child to therapy so when he is 16 he interacts, socializes, learns and becomes a man. If you deny him services you risk his ability to have an independent life. Whether you think he has a problem or not, is it worth that risk? Suck it up, swallow your pride and get your child help. There are only positives that result from it.

Any father can call me.  Any dad can write me, and any dad can cry openly me over their child diagnosis. There is no shame, no judgement, no laughing. OUR KIDS DESERVE THE BEST CHANCE AT A POSITIVE LIFE. That is all you need to gain out of this. Give the kid the chance to have a life by getting help at an early age.

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Sep 22

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.

Thanks

Bernard

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Jun 28

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.

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Apr 12

I am lucky to have so many parents reach out to me with their stories about their Children. Please keep the stories coming and ask as many questions as you want. I am not a child behavorist or an expert by any means, but I have a PDD-NOS child who is night and day different then when he was first diagnosed. He improved and changed because no matter how hard it was to find out our child had developmental issues we never treated him differently. Instead we got the help he needed, embraced him and showered him with love and learned how to communicate in a way he understood. Eli still has many of the PDD-NOS issues but he is vastly improved and most people don’t see the PDD-NOS. PDD-NOS is nothing to be ashamed about, it is simply a term. Your PDD-NOS child is locked in a world of confusion. All you have to do is open the door!

I invite any parent who wants to talk about their child, ask questions, get advice to email me or reply to this or any post on this blog. I might not have the answers, but I do have seven years of experience with my PDD-NOS child who is fantastic and has conquered many of his PDD-NOS issues. The SEIT always said that Eli had it in him the entire time, and that he knew Eli would be fine. He was right. Eli is brilliant, stubborn, affectionate, social, responsible, energetic, at times moody and cranky but show me a kid who isn’t. Embrace the PDD-NOS, get your child the help they need to unlock the developmental hurdles.

Bernard
bernardhny@gmail.com <—- yes I know this invites spam, but your kids are worth it and my spam filter can handle it.

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Nov 05

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.

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Sep 14

Eli is a magical kid. To sum it up he is very polite, very nice to others and is exceptionally smart. Yesterday we received a letter home from school asking if we could bring Eli down to the PTA meeting because he was selected to say the pledge at the start of the meeting. When the principal of the school called him up (as well as a student from 2nd, 3rd, 4th and 5th grade) he said that these kids were already excelling in class and had shown that they were going to be stars.

Nice job my boy. When his teacher approached me and said that academically he is amazing I beamed a huge smile. All the nights of reading stories, playing games like guess the planet, talking about science, math and nature. It all pays off. Eli is a sponge and absorbs almost everything he hears and sees. It is really rewarding.

As for the now declassified PDD-NOS the teacher says she has stopped him from stimming with his hands twice, that socially he has no issues and that he is doing great. We were worried that without services and structure that he would end up taking steps backwards. It is entirely to early to tell if this is going to be the case but so far so good.

As for Zachary – who is equally amazing, he has his first virus since going back to daycare. Unreal. Jodi is taking the day off. This kid has no immune system.

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