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 love how the comments section has taken off with communication between parents working together to discuss their children. This is a dream come true that the blog is becoming a resource for others. I just wanted to remind people that all comments go through moderation. So if you write a comment and it does not appear instantly please understand that it is being held for approval.

I try to reply or approve all comments as soon as possible.

Thanks
Bernard

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I have been thinking lately of all the great headway Eli has made over the last few years and I couldn’t be more proud of what he has accomplished. Unfortunately there are a lot of things that still frustrate the hell out of me and brings me to tears. So I began to think of all the bad things and wondered what frustrates me the most. The answer is fixations. Eli fixates on things.

When I say fixate I mean they kid does not alter from a subject until a new subject catches his interest. When I get home from work I am presented with Eli coming to me asking me to pick a number, or a color which is translated into me selecting whatever he is fixated on. Tonight it was powers associated with the characters from Super Mario characters. I was bombarded with a re-telling of the entire Mario World, with such minute details that I could swear he has been studying Mario for a decade and did a college thesis on the subject.

Now I am sure that the reason for this is the Aspergers Syndrome and his superior intellect. He has a photographic memory and anything he sees becomes  locked in his mind for eternity. He reads the story line and instantly knows every stat, every fact and every hidden part of the entire  universe. It would be nice to see Eli focus this talent on something more important than video games, Pokemon or Scooby Doo enemies. Unfortunately the normal things tend to bore him. Although if you asked him anything about space, the planets, the universe or animals he would school you. I just wish he could avoid internalizing all of it and have a normal conversation.

(1 votes, average: 5.00 out of 5)

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A lot of us probably think that coddling our PDD-NOS is the only way to handle a meltdown. I am beginning to think that coddling actually hampers the curbing of meltdowns and I was looking for input from other PDD-NOS parents.

When your child melts you have to analyze the cause at a moments notice. There are going to be situations where grabbing them and hugging them is going to be the best thing and probably the only thing that is going to help them, but in other scenarios it is an over-reaction that needs to be curbed.

An example was something simple today. Eli was using a very decorative pencil as a magic wand and when he misplaced it he melted big time. The solution was simple, I gave him two other options for use as the magic wand, of course neither sufficed. At this point I told him he was over-reacting and that he need to adjust to the situation in a better way. He cried. I ignored the situation and said he had options and that melting was just not acceptable.

It took him awhile but he ended up acknowledging that he was acting poorly and promised to try to not do it again. I think that is a good start.

(1 votes, average: 5.00 out of 5)

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Most of you know by now that Jodi is expecting our third child. When Eli was born and we discovered that he had PDD-NOS I was hesitant to have a second child. My concern was that the second child could have the same problem or GOD forbid have something worse. When we had Zachary our fears were eased when he seemed and continues to develop normally.

It took me awhile to consider having a third child, but I caved in and it didn’t take long before Jodi told me she had a bun in the oven. Our thoughts went to the desire of having a little girl to go along with the two boys. Last night, while I was sick in my bed throwing up non-stop Jodi went to the doc with the boys and her dad and found out that we are in fact having a little girl.

Now the worry pops up. I know how to take care of boys. I know how to change them, play with them, rough house with them. What the hell do I do with a little girl? How do you play with a little girl? Tea parties? Princess stuff…oh come on. I have no training in this!

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Today was a late start at Eli’s school and as the kids gathered around the front door a girl a few years older than Eli was asking her friend how she enjoyed the blizzard. Eli waited patiently and listened to each person tell their stories and the girl looked around and ask, “Anyone else have fun in the snow?”

Eli’s looked at her, asked her what her name was and said, “I had a blast playing in the snow. I built a slide of snow with my next door neighbors and we took turns trying to ride the slide all the way to the bottom of the hill. It rocked”

At this I did a double take, not only did he socialize with kids he didn’t know, but he spoke like a cool kid. Totally normal behavior and very appropriate. I was  very proud of him, so being the dad I am I called out, Hey Eli…I love you, have a great day.

He turned, rolled his eyes at me and shook his head. I am the uncool dad who just said something uncool in front of the cute girls. DOH!

(1 votes, average: 5.00 out of 5)

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The Blizzard of 2013 is kicking the crap out of Long Island. We got 32 inches of snow by me. The storm occurred on the 8th, and now 3 days later the roads are in horrible shape, schools are closed, the local mall has the roof collapse under the weight of snow followed by rain. I fear the worst is yet to come with more rain and snow on the way.

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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.

(2 votes, average: 5.00 out of 5)

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