25. October 2010 by Kelly.

Kyle & Hunter over the past several years have become more interested in 2 holidays, they are Halloween and Christmas; probably more because of the decoration that happens than anything else.

Due to the fact that Hunter is basically non-verbal or unintelligible, it is the greatest treat to hear him say “crick or tree” with the worlds biggest smile on his face. I have also grown to love hearing him say “Nee” to me in the morning, this is how he says ‘good morning’.

My biggest sacrifice as a parent of children with special needs is that I will never have the opportunity to have a conversation with my sons. How was your day son? What is your favorite thing about life, or high school, or ANYTHING? What would you like for dinner? Did you sleep well? Tell me about your dreams, or tell me about your class mates and your teachers, or just tell me anything; I will wait my entire life just to hear you talk.

During a recent conversation with my wife, she had told me of a coworker of hers that is also a pastor; and her coworkers father is a pastor as well and that the two of them pray that our sons will speak.

I am over whelmed that someone would pray for such a blessing and that they pray it for my sons. These are the things in life that make living special and were it not for Kyle & Hunter I would not be witness; so I give thanks for all my blessings and to my creator I give all my praise.

Kyle and Hunter have a fan page on Facebook and welcome you to become a fan and watch them grow up.

Happy Halloween, be safe, be well, be happy and be Blessed.

Thank you for reading and remember, everything matters, everyday.

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11. October 2010 by Kelly.

Being told our children had been born with Down syndrome (DS) was traumatic to say the least; now we have come to understand that our sons may also have Autism spectrum disorder (ASD) or some variation thereof.

Unlike when our sons were born, we do not question why this happened; only how can we help our sons have the best possible life. To understand DS plus ASD is like trying to understand why oil and water do not mix, the trick is understanding how the two change the dynamic or the perceived characteristic of the major player, in our case Down syndrome.

People with DS are loving and social; people with ASD are loving and not social; DS tends to mean that learning, speech and receptive skills come at a slower pace; ASD further reduces the same. At this point in time, there is neither a cause nor cure for either and I’m of the belief that there need never be a cure for DS; I am still wrestling with ASD, but if I had the option of removing one, I’d pick ASD.

In researching ASD via the internet, I discovered one common factor; there is a lot of information that is geared towards single mothers and there is an equal amount of information that tells parents what to ‘look for’ but very little that tells us or offers us any idea of how to adapt, love each other and teach our children in spite of the difficulties we face. Imagine you are in a card game in which all the players speak different languages, there is no interpreter and if you quit everybody loses. Wouldn’t it be great if we all just stayed in the game and everybody won?

Alone we can do so little, together we can do so much. – Helen Keller

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7. October 2010 by Kelly.

Yesterday at the high school that Kyle and Hunter attend there was a scheduled practice / drill for a school lock down. As part of the drill the alarm sounds to alert students and staff of the lock down, but it is made known that the alarm is a drill or practice only. Kyle and Hunter however do not understand, all they hear is the alarm and they immediately go into ’shut down’ mode by putting their hands over their ears, they retreat to a restroom and sit on the floor. Their teachers  and para professionals attempt to calm them and request that they follow instructions and move to a safe area; but the boys are in fear and only want the alarm to stop so they can focus on what is happening and then process what is being asked of them.

 After the drill, the boys teachers call us to explain what has happened and ask our opinion on how to prepare the boys for future exercises and talk through scenarios in the event that one day the drill is not practice, but reality. Sad that we find ourselves preparing for the worst things that can happen, but as a society, this is reality.

School resumes, the boys finish their day and come home happy and as usual, do not mention or appear to have had anything but a ‘great day’ at school. Shortly after arriving at home, one of their para pros rings the door bell; Miss ‘P’ as she is known by the boys, has stopped by to check on Kyle & Hunter to make sure they are “OK” and she has brought each an ice cream treat, to let them know she cares and is concerned that they want to return to school the next day without fear. The boys are thrilled to see her and with the ice cream and as our luck has it, our sons love school and look forward to it everyday, probably in large part to those that they get to spend their days with, like Miss ‘P’.

We notice these ‘acts of kindness’ and we stand in awe each and every-time we are witness to the kindness of another towards our sons; yesterday, it was Miss ‘P’, thank you and bless you.

You too can make a difference in someone’s day even if you think nobody notices.

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5. October 2010 by Kelly.

October 1995; my wife Michele and I were still learning or ‘becoming aware’ of what Down syndrome was and is and what it meant to us and our sons. 15 years later and I can honestly tell you that we are still learning.  

For those looking for the medical or technical description of Down syndrome, you will not find it here; for those looking to become more aware of this disability through the eyes and life of a parent, you may have indeed come to the right place. 

My wife and I have identical twin boys, both born with Down syndrome, the odds of which are one in 80 million; they both also have been diagnosed with some Autism spectrum disorder markers, in our son’s case, Aspergers and severe Obsessive Compulsive Disorder (OCD). None of these diagnoses are fatal nor are they contagious.  

Aside from the physical characteristics, each of our sons is considered non-verbal, high functioning, and active teenage boys. The can read basic sentences, the can use the bathroom without assistance other than unbuttoning and re-buttoning their pants, they attend public schools and are included in regular class rooms with the other ‘typical’ students. They eat lunch with the other kids, go to school dances and activities and have every opportunity that their friends have as long as there is adult supervision for the sake of safety. 

The only things our sons do not do is complain; they don’t complain about having Down syndrome, or school or their teachers or the other kids at school, they don’t  tell their mom or I that they hate us, they always say please and thank you and they tell us they love us everyday. 

So if you know very little or nothing at all about Down syndrome, let me offer a line from one of my many favorite songs: Give a little bit, ‘see the man with the lonely eyes, oh take his hand, you’ll be surprised, give a little bit of your love to me, I’ll give a little bit of my life for you’. 

Down syndrome awareness, be aware that love and joy are within reach.

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