Raising Eli & Zachary + a little Princess

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.

(1 votes, average: 3.00 out of 5)

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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.

(1 votes, average: 5.00 out of 5)

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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.

(3 votes, average: 4.33 out of 5)

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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

(1 votes, average: 5.00 out of 5)

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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.

(1 votes, average: 4.00 out of 5)

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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.

(5 votes, average: 2.80 out of 5)

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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.

(2 votes, average: 3.50 out of 5)

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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.

(2 votes, average: 5.00 out of 5)

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Ok well superstar is a bit premature but heck a few years ago I always wondered if Eli would ever be able to participate in a team sport. We were encouraged to get Eli involved in an individual sport so we enrolled him in swimming (which has done a great job with) but soon Eli started asking about soccer and baseball.

Enrolling him in T-ball is just another lesson for parents with children who are on the spectrum. Although Eli has been declassified it was still a worry for us, but as always Eli has jumped at the chance and shown that he is more than capapble of holding his own socially, physically and mentally with all the other kids. In fact, Eli has been more social (I credit Ralph – his SEIT) and Eli’s own desire to have fun and enjoy himself.

So T-Ball started and Eli is doing great. He hits the ball well, catches the ball and can run the bases. You have to see him smile when he plays and it really makes me proud. Today we have a practice where the coaches (of which I am one) will try to get the kids to actually not run from center field to the pitchers mound each time the ball is hit. I equate it to bumblebee soccer. They all just want to be part of the game.

I have to download some pictures and post them. Too funny!

The lesson in this is simple: Never under estimate your child when it comes to social activities and sports. They might just surprise you and you never know if it can be the trigger they need socially.

(2 votes, average: 4.00 out of 5)

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I received an email from a parent today regarding PDD-NOS that explained how her child was 4 years old and still not having full conversations. She wanted to know when Eli first starting having conversations.

This is an excellent question and not as easy of one to answer. Eli was diagnosed with PDD-NOS at an early age (1.5) and he has been receiving services ever since. Having verbal conversations using full sentences is a skill that is usually achieved between 18 and 24 months. But you have to define what is really meant by speaking in a full sentence. Is “Mommy…juice” a full sentence or is “Mommy can I have some juice” a full sentence? Also you have to understand the nature of the conversation and who is involved. Is this between mom and child or is this between child and friend.

I don’t recall when Eli started talking in full sentences. I do know that his speech was delayed and we were receiving (and still are) receiving speech therapy but more for appropriate speech in terms of social skills when interacting with other kids. I think Eli was speaking in sentences around 24-30 months but really began to speak and express himself a little later than that. As with PDD-NOS, each child struggles with different areas of development.

My only suggestion is to make sure that the speech therapy is maxed out through your early intervention program. If your child is having issues with speech, they should be getting as much therapy as possible. Having a great Special Education Intervention Teacher (thanks Ralph Barone) was a miracle for Eli. If you feel the problem is not getting better, maybe it is time to get more help or different help. Maybe an integrated class or a dedicated school is more appropriate. Either way asking for more help, actually let me rephrase. Demanding and fighting for more services is a right. Sometimes you have to scream and cry to get it but your child is worth it.

Good luck!

Bernard

(1 votes, average: 5.00 out of 5)

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