Having A Son With Down Syndrome - An Introduction To Aiden

in #introduceyourself8 years ago (edited)

Finding Out

At about 30 weeks my wife started getting bigger than she should of. For some reason she was taking on extra fluid that should have drained. It turned out that our son had an abnormality where his stomach did not attach to his intestines that was causing my wife to take on too much fluid.


At first the doctors described what the problem was and then that it was 95% successful in treating however there is a high correlation between this and down syndrome, however without further tests they could not know for sure. This gave us some time to start to prepare for what was to come.


Every parent has ideas of what their child will be and hopes that they have a healthy child and this was our hope as well. The tests came back positive that our son had Down Syndrome and I will admit that I was taking back by it at first. I wasn’t sure what to think and as most things of this level it takes some time to sink in. There were ranges of emotions from anger to sadness as well as an understanding that Aiden was a person too and his life is important.


At this point in time I had no real connection to Aiden other than he was to be my son. However that was soon to change as we got to do regular ultrasounds that showed pictures of my son moving around in his mother's belly.  I was soon to find out that Aiden was a charismatic and energetic young man with lots of wit even before he was born.


We could see Aiden liked to swim and play and one time he even grabbed hold of a needle that the doctor was using to drain the excessive fluid. It was pretty cool.
I was already starting to learn a little about Aiden's incredible personality that I was going to get to know even better very soon.

At Last We Meet

Finally the day came. Aiden was born premature by a few weeks early via a C section. He was very small and weight 7.5 pounds. He had to go to the NICU right away where he was put on oxygen and nutrient support since his stomach did not connect to his intestines. That was a rough time as we were not sure if would live for sure.


Still I could see right away with his energy and the way he would look at me that this little man was the same guy who loved to swim and play in his mom just days before. He would grab my finger and shake it every time we came to visit him in the hospital. Something inside me knew that he was going to be ok but still I prayed for his health and safety every day.


The day came for the operation to take place that would connect his stomach to his intestines and we were all very nervous and anxious to see him be better and start drinking milk. It was a 5 hour wait and the news was good, Aiden came through perfect.


Unfortunately there was more to come that was not known about. Aiden was diagnosed with transient leukemia once his blood tests came back with low platelet counts.  Well without knowing anything about leukemia we were once again sent into a panic of fear that our son could potentially die.  With a deep breath we started researching and finding out more about what this mean. It turned out after speaking with a specialist that this form of leukemia called transient as the name suggests comes and goes. That is the blood levels of certain platelets will go up and down without causing any serious side effects and that 89% of cases are curable if they go into full leukemia.


Well that was good news and it just meant that we were going to have to monitor his blood levels for the next 10 years.


As Aiden got stronger in the NICU I could see his little personality and charm coming out. He naturally had a nice calm disposition and would often laugh and smile at us when we would visit. Soon he would be coming home after 3 weeks.

Living With Aiden

Aiden quickly won my heart and became my new best friend.  He loved to play with whatever he could get his hands on. I remember one time when he got his hands on a small ball and then threw it and let out a big evil laugh. I loved it.


I soon learned that anything a typical kid could do Aiden could do too. Whether playing ball, or climbing rocks Aiden would do it. His fascination with learning was and is incredibly strong. He wanted to read books all day and learn sign language. Signing Time videos quickly became his favorite and I began to realize that people with down syndrome are very capable people.


There are tough times as certain things are more challenging and he can still be a little stinker like all kids saying no and terrifying his sister by hitting her and taking her things.

Trucks, Trains, and Super Heroes are his favorite things and he is all boy when it comes to what he loves to do. We are proud of our little man as he can count to 10 and knows his ABCs and is only 4 years old. 


One of the hardest things for people with down syndrome is talking since people with down syndrome have low muscle tone it causes their tongue to relax and this where the speech issues come in. So we are working hard on this one and it takes some time unlike our daughter who is talking and a year younger. Aiden knows lots of words and understands what you are saying but for him saying the words together to make sentences is harder than for us.  Still he always puts in a best effort and has a smile to go along with it.


I must say living with Aiden has its challenges but at the same time the rewards are having his happy voice and smile cheer me up anytime I want.
 


Thanks for taking the time to read my story.

https://steemit.com/@groovy


ADDITIONAL PROOF THIS IS NOT FAKE FOR PEOPLE ASKING IN THE COMMENTS SECTION BELOW. 

HERE ARE TWO MORE PHOTOS OF AIDEN HOLDING THE PAPER THAT I WROTE ON THAT I DID NOT USE WHEN I MADE THIS POST.



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Very inspirational article. I am a geriatric nurse for handicapped people and try my best to gain some publicity on the topic of disability. I also work with 2 down syndrome people on my group and aim for exposing the differences between "normal" and "handicapped" (both are stupid terms) are really marginal. Let`s make inclusion a visibile topic on steemit for the greater good of us all.

Maybe you are interested in my stories I shared on this topic : https://steemit.com/disability/@supermeatboy/working-in-a-home-for-the-mentally-handicapped-part-two

Thanks for being there for people who need the help. Yes the term down syndrome is a bit misleading especially when it comes the word Down which was a persons name. I personally like Trisomy 21 as a better term since it does not lead people to think the word Down is an indication of the disposition of a person. Thanks for your share.

I'll be following you for sure, as I love to read stories about people overcoming challenges. At one time, I was planning on becoming a special education teacher, and I've volunteered in a lot of schools, groups, etc. and have been blessed by the people who live with challenges abut are so positive.

Wonderful story! Welcome to Steem! The last picture is really heart-warming, you all look so happy together! I wish to some day find the same kind of happiness.

I believe you will find the same kind of happiness it comes in many ways for me something that was hard to deal with became quite a blessing.

Yes. It's very cliche' sounding, but walking through discomfort and fear is what makes us better human beings.

Hello, can you provide a video proof that that is you? Just a short film of you saying something Steem related.

Because it appears that these images have been edited.

I apologise sincerely if I'm wrong.

I will give you time to respond before flagging you.

Gave your 5 hours no response, so I've written a post and flagged you:

https://steemit.com/introduceyourself/@positive/potentially-disgusting-scam-hope-it-s-not-true-groovy-introduceyourself

I really hope you're wrong about this, we don't need scammers like that in the community..

me too. Please provide video proof. Sorry if I am wrong in advance.

Welcome aboard - i'd also love to see a video proof with you all together!I Apologize if i'm wrong here - pls don't take it offended - but if u aren'T able to provide until payout, i've to downvote this post .. why?

It is really a sensitive topic with scams and content thefts etc currently, so pls provide a video proof , schouldn't be a problem

I disagree. These look like everyday, run of the mill images. What aspect looks edited?

I ran it through http://imageedited.com/ and checked the metadata which appeared to indicate some modification. Though I realise I may be wrong. I just want to make sure scams don't prevail.

Awesome. It takes a big person to admit to potential mistakes. Good curation is exactly what we need.... Keep it up!

I don't understand this concept that everyone must provide proof of their reality to satisfy you, or any other random person here. If you honestly feel they are fake, that is one thing, but to down vote or threaten a down vote because they have not provided video proof within a certain time frame is ridiculous. Obviously you have no idea of the struggles of someone that is raising a child with special needs. Otherwise you would not make such disrespectful requests. If you like the story up vote it, if you think someone is fake or taking advantage of the system then by all means down vote. These people seem very real to me and I am appalled at the number of comments here telling them to "prove it" when she has a number of photos with her son and the date on a piece of paper. You all need to check yourselves and your ego at the door. Steemit, I hope would be a community where we can support and learn from each other. People ask for proof, and say "sorry in advance if I'm wrong" how about send the person a message and get to know them, as you would in the real world. If then after you have some "proof" your self of something fake about a post or a person, then you down vote. I can not stress enough that this line of questioning to someone who has just posted a very person thing is not only very disrespectful, but only serves to keep others who may share their stories silent for fear of being attacked and called fake. I see there are still down votes on this post and I would encourage anyone who still has a down vote in place to remove it now. Thanks.

They don't have to do anything. But depending on what they do I will flag because I don't want to endorse potential scams.

Secondly, I have alot of family with special needs please don't make assumptions about me, you don't know me.

I have also witnessed first hand the depths people will go to, to extract money from others.

So I do not assume people to be honest. I have a neutral opinion on people, and if a flag is raised I address it.

I will give you time to respond before flagging you.
Gave your 5 hours no response, so I've written a post and flagged you:

sounds very rude and like a threat, I haven't done an #introduceyourself post till now, Is posting a video mandatory? When did this introducing yourself thing get so complicated? #IntroduceYouself used to be cool, now it doesn't sound that cool.

All right no worries Positive, you kind of caught me off guard this morning. No hard feelings. I have a better understanding of the necessity of proof now.

So don't endorse it? Simple really isn't it.. It's like buying something of the internet, if YOU Feel it's fishy, Don't buy it.. Same with other people, Directly accusing someone (Because that is technically what your doing) is wrong, Should i flag you for inappropriate behaviour? No! because i'm not that shallow.. I'm in agreement with you, but the way you came across was all wrong man.. Sorry to be the one to say it, but sometimes someone has to say the things we don't want to hear! Just look at politicians...

Are you serious! First of all when I left this last night it was 12:30 AM at night and now it is 10:52 AM. In case you didn't notice my son is holding a sign up with words I wrote on it. I believe this is proof enough. I think your name positive should be negative. Please this is a bad way to try and moderate especially when my son is holding a sign up that is clearly not edited in any way.

Can you provide evidence that YOU are you? :) just saying.. Flagging people for your own personal distrust is distasteful to say the least.

It's not about distrust. I don't want to see the same scams that have infected every social media affect Steem.

Principally because this time scamming would be legitimized.

So you'd have an economy based on underhand behaviour, which will not encourage the sort of traffic that would benefit Steemit in the long run.

I can respect that :) But innocent until proven guilty still stands for something here. insinuating that they're not who they say they are is sort of tarring them with the same brush as a criminal, I don't believe that's the way to go that's all :) Not to mention the top picture is dated and clearly aimed towards steemit, Proving they are who they say they are. I can tell you for a fact, that's not photoshopped, So unless you can find the exact same picture elsewhere.. I'm inclined to say they are who they say they are.

With all my respect to your fair words of compassion. But will you please answer one question, you may only answer yourself. What if one day, you open steem and the first twenty-thirty posts you see in the top of trending are filled with content like this? There are millions of ill children in the world, let alone adult people, so let's make Steem the place of pilgrimage for them? Is that really the steem you want in future?

I posted no images so I don't have to prove anything. No identity theft etcetera All I'm posting is content.

I also have a child with Down Syndrome. She's an almost 10 year old who does the exact same thing with the box of tissues. She would also unravel all the TP like a kitty cat when she was younger. Looking forward to exchanging funny stories, as I have many! Welcome.

That's so funny because I have seen certain behaviors throughout children with down syndrome that stand out. I'll be thinking that my kid is unique in certain ways and them one day I'll see a random kid with down syndrome doing the same stuff. Thanks for the share and look forward to hearing your stories some day.

@groovy I know exactly what you mean. I'll observe other people with down syndrome in public and I swear they make the exact same cheesy grin as my daughter. Come on you know what I'm talking about right?? I assume you've at least heard about that show

"Born This Way"
http://www.aetv.com/shows/born-this-way

I see so many of the same behaviors/mannerism's as my daughter....it's kinda funny

My god, that down syndrome smile. I've never really thought about it before, but there really isn't anything else quite like it in the world is there? I think it truly is proof of God. You just feel so much love and warmth radiating from their faces. It makes the challenges worth it doesn't it?

True story, my favorite aunt had that exact same smile. I remember seeing her smile all the time when I was growing up. Always there, whenever I went to my grandmothers. Then when I was about 10 my grandmother died. My aunt was sent away to an assisted living facility and I didn't get to see her again until I was an adult.

She still had the same smile. It felt good to see that smile again. :D

Hate to sound like the bad guy here but... does Aiden really love steemit?

just because he has down syndrome doesn't mean he can't understand complicated cryptocurrency mechanics, i wouldn't be surprized if he has over 9000 confirmed kills in iraq.

anything is possible, and i can tell this kid is going to achieve super saiyajin 2 VERY SOON.

God bless.

Yeah i guess they're just starting young these days..

you're a vile human bean

I have to agree with the latter mate, Children aren't like they were 20 years ago, When i was a child, I get my child involved in everything from facebook to minecraft, She's 2 coming on 22.. She loves to sit there and watch me play games like ARMA3 and tries to get involved all the time... So yeah - I think he probably does like steem, His parents have clearly got him involved with it.. Respectfully.. :)

Yeah Aiden is already a very tech savy kid. He uses ipad daily. He can scroll through and pick out games and then figure out how to use them. Very smart. Like I said in my post having a kid with down syndrome has showed me he can do most everything.

He will when I buy him stuff from the post about him. LOL

I can relate, my father has been working with artists having Down-syndrome, at Baltazar Theatre in Hungary. They are amazingly sensitive and can express very strong emotions through their art.
Aiden is amazing. :)

Great story and much love to you and your family. My older sister was born with Down's and I know the challenges can be tough. Sounds like Aiden has already taught you some important lessons on patience and love. Thank you for sharing!

Thanks so much for the kinds words, Aiden definitely has taught me patience and love.

Hey buddy! As a fellow parent to two children I am extremely proud to welcome you here to steemit, Your little boy, Aiden is gorgeous! He deserves everything the world has to give him and more!

What a heartwarming post. Aiden is surely very lucky to have you as parents. He's adorable and can make anyone's heart melt with this smile. :)

Thanks that means so much I appreciate the kind words. His smile and joy keeps me going.