The Trials and Triumphs of Down Syndrome

A Stick a Piece of String and an empty Box

2011-07-11T15:30:00.000-06:00

Trying wordpress out to see if I like it better than blogger.
Check it out

http://www.kellykrei.com/

Thank you!

AWAARE

2011-06-06T14:10:00.000-06:00

I also have a dream . . . and a question

2011-02-20T20:23:00.000-07:00

Part of my journey as a father of children with special needs led me to become involved with a local Down syndrome non-profit. I served 9 years and exited as past president of the board. One of the trends discovered during my service was that families strayed or distanced from the organization as their child or children with special needs became older.
These families, mine now included, find themselves involved in age appropriate activities with their children, from special Olympics and various sports to equestrian to music and theatre; one common theme was as clear 16 years ago as it is today, parents scramble to find activities that hold their child’s/young adults interest and as a community we become separated as quickly as we came together.
Now, my wife and I search for ‘programs and services’ for our sons as they near the end of their school age life; things like ‘work’ and ‘day programs’ loom over us almost like a dark cloud in that we do not know what the future holds, only that we face ‘wait lists’ in order to receive ‘services’; and we are not alone.
Globally, societies are all facing ‘living within their means’ and ‘spending cuts’ and in the US, non-profits continue to struggle as funding sources fade. The saturation of non-profits does not help and is a subject for another time; but the fact remains, non-profits struggle and fight to remain alive even at the cost of alienating the very consumer they pledge to serve.
One more note; Entitlement programs in the US are completely useless as they penalize those intended to benefit and are scammed and abused by those that have no ambition to make a difference on this earth, but only look for excuses; again, a topic for another time.
In a day and time when mothers and fathers struggle to make ends meet and work more at their jobs than they do at their marriages and families; does it strike you as odd as it does me that most people will spend more time on planning a vacation than planning for the future of their family? People spend more money on their cars than they do on their homes; and the list goes on; but in this over spend, and highly over informed world, my dream is to live a happy life, a simple life and I dream to see that my wife and sons live the same. What matters most to me are the people that God has entrusted Me With.
What inspires you?

Make Time - Have a Plan and Set Priorities

2011-02-04T15:10:00.000-07:00

Of all the lessons I have learned since becoming the parent of children with special needs, Time, Planning and Priorities have been the most valuable. When my sons entered the world my wife and I were fortunate enough to be introduced to a woman that brought us a book titled Babies with Down Syndrome, A New Parents Guide edited by Karen Stray-Gundersen. The book offered information about Down syndrome (DS), its characteristics and what we might experience or encounter in the next few years of our son’s life.

We were also fortunate enough to have a doctor that knew of a pediatrician that had vast experience with infants born with DS; and so I read the book from cover to cover and had a page full of questions and instructions for our new doctor about our new children and upon going over each and every item on my list, our doctor took a deep breath and asked my wife and I to relax and take time to enjoy our babies. He explained that he was familiar and very aware of what steps needed to be taken and when; his main concern at that point was us. This doctor had the nerve to care not only for our babies, but my wife and I as well; his concern was that in our haste to become experts on DS and prepare our sons for everything they could ever possibly face, that we might miss out on them being what they were right then, our babies.

That day was March 11, 1995 and now its February 4, 2011, my how ‘time’ flies.

Planning for children with special needs is an evolution; it is constantly changing as the needs of our children change and as they develop and grow; but of the most importance is to have a plan. Our plan included ‘early intervention’ which means that we sought out advice on what we could do as quickly as possible to give our sons the most opportunity to have the best possible life. This led us to Bal Swan Learning Center in Broomfield, CO and to Adams Camp where our sons received care and therapies and a foundation that we continue to nurture today.

Roughly 10 years ago I attended a meeting held at our local Community Center Board (CCB); the topic was ‘Transition and Guardianship’ and I’ll never forget how many parents came to find out how the state of Colorado was going to care for their children when they turned 18. I was completely shocked that so many would allow their children to become a Ward of the state as their ‘plan’ for a better life. I would also find out that the state of Colorado is one of the worst in our country for available services for the developmentally disabled and that there is a wait list in most if not all counties in Colorado for ‘consumers’ to get services when they become eligible. The wait list in Colorado is still as bad or worse today as it was 10 years ago; my point is that my wife and I have made several plans; plan A, B and C and we continue to modify all our plans as our son’s age. The worst thing that can happen is not having a plan when your child needs it most, and you are not there to see it through . . . if you need help in developing a plan and you don’t know who to contact or where to start, contact me.

Priorities are next; each step must occur in the proper order, you know the saying, ‘do get put the cart in front of the horse’ and if you take ‘time’ to put together a ‘plan’ and base your plan on every scenario you think applies, then you can ‘prioritize’ accordingly. For example, our sons are currently half way through their sophomore year in high school; so we are currently planning for post high school education and services. Fortunately for us and our sons, we live in Adams 12 School District and our school district has the necessary program in place to support the needs of our children and those like them until age 21. This was part of our plan after our sons were born, you see we lived in Broomfield when our sons were born, but upon doing some research we felt most confident in Adams 12 to provide the appropriate educational environment for our children so we moved to Thornton to ensure our sons could attend Adams 12 schools; this is both planning and prioritizing.

If you find this helpful, please share it with those that may need it; please feel free to comment or contact me at Kelly@kreilife.com

Pay Attention or you may end up with Strawberry Cream Cheese

2011-01-19T13:02:00.000-07:00

"You must take personal responsibility. You cannot change the circumstances, the seasons, or the wind, but you can change yourself. That is something you have charge of.” Jim Rohn
Have you ever noticed how so many people work so hard at telling others how to do things better; make things better; provide a better service or product; and on and on? Have you ever wondered what these people do that makes them worthy of telling us what we can ‘do better’?
And then there are the ‘helpers’; those that tell us, ‘I am passionate about helping people’ but when you really need help . . . they’re know where to be found. Or maybe your having a conversation and someone that is listening in and not even involved in your conversation and they become “Arnold Horseshack”” OH OH OH I can Help” and you weren’t even asking for help; maybe all you were doing was looking for an eager ear that would ‘LISTEN’ . . .
Or better yet, do you practice what you preach? How can we expect others to be ‘better’ if we ourselves are not ‘better’? It doesn’t count if only one area of your life is great and everything else in your life is messed up. It does count if one area is great and you are consciously working on all the rest all the time to make everything else better; afterall should our lives not be spent in continually becoming “Better”?
This morning as I was looking at myself in the mirror, I noticed that approaching 50 and not being as active as I was 15 years ago that I have put on the proverbial ‘gut’, so I took another look and thought, now Kelly, if you take the time and spend the money to eliminate your psoriasis; had hair transplanted to that bald spot on the top of your head; started going to the dentist again; sinus surgery . . .you better start watching what you eat and drink and get that gut back where it belongs, you know, out of site out of mind . . . . A real ‘gut check’ if you will.
So, in order to pay more attention to what I am eating I packed my lunch, rather than planning ahead on what fast food place I would go to today. This way I must be accountable to myself, rather than blame my ‘gut’ on McCheeseburger; so as I pulled my morning snack out of the bag (I packed an everything bagel, (top only) and an individual cream cheese, what did I find . . . that I had grabbed an individual strawberry cream cheese rather than the plain / traditional kind that I was looking forward to. I can’t stand strawberry cream cheese, but my wife likes it; unfortunately she wasn’t with me to enjoy my bagel.

As I was heating up my lunch, which smelled every bit as good today as it did last night for dinner, an office mate says ‘smells great, if you need any help with that let me know’ . . . to which I replied, ‘I have a bagel and cream cheese if you like?’ One good turn does not deserve another but I just couldn’t resist . . .

“Formal education will make you a living; self-education will make you a fortune.” Jim Rohn

The best way to have a great day is by making it so.

Be Well and Be Blessed.

Spend More Time Without Fear and Worry and Live Better

2011-01-07T15:32:00.000-07:00

Why is it that we spend so much of our time and lives living in fear of something or worrying about things that may never happen or not really matter even if they do happen?

For example, last night as I was channel surfing I stopped on an MSNBC show called ‘The Facebook Effect”, it profiled both the company and some of it millions of users, one of which was worried that FB was sharing her information with the world; so in order to stop FB she deleted her account, which took her 2 and ½ hours. Seriously.

If you know me, you know that my wife and I have twin sons, both have Down syndrome and Autism Spectrum Disorder and in my quest to become a better father, husband and person I have learned that my sons are not only special, but divinely gifted in that if I take what I learn from them and both apply and share it; everyone wins. So the lesson of the day is: Spend more time without fear and worry and live better.

Easier said than done, so I’ll go first and let you know how it works out; here are a few of the things I will stop fearing and worrying about:

1. What does the future hold for my sons?

2. What happens to my sons if they out live my wife and me?

3. Bills, debt, mortgages, etc.

4. Will the Broncos ever win another super bowl?

5. Heights, big hairy spiders and dentists.

6. New Years Resolutions

7. What happened yesterday and what might happen tomorrow.

Just to name a few . . .and ‘how?’ you ask do I intend to stop theses fears and worries . . . I’m going to start by spending more time working on myself, becoming a better father, husband, friend and person because I know one thing:

• I was created in God’s image; what I do in this life is my choice and what I receive will be the result of my choices and that my thoughts manifest themselves; therefore I choose to leave fear and worry in my rear view mirror because my family is counting on me.

If for no other selfish reason than that; the commitment I made when I married my wife and again when we decided to bring children into this world, for these very reasons I owe them my very best, every moment, every day and if I place all my focus on being the best Kelly Krei that I can possibly be, I will have no time left for fear and worry.

Kyle and Hunter kinect bowling

2010-12-25T11:08:00.000-07:00

In Our Journey of Life We Should Not Walk Alone

2010-12-22T09:36:00.000-07:00

I have a younger brother, he turned 47 last Friday the 17th, according to Google his home is 5.5 miles or less than 15 minutes from my home, his name is Steven and prefers Steve, and I nicknamed him Ivan many years ago. He has a wife, 3 children; one from his current wife and two from his first marriage, his wife’s name is Dawn.

We called him last Friday to wish him a Happy Birthday and to catch up on the goings on of he and his family; Dawn he said had just undergone a mastectomy and was half way through chemo . . .

I lost my breath and I could sense through the phone that my little brother was choking back tears, as was I. The prognosis at this point is positive and Dawn and her doctors are planning removing her other breast when she completes chemo, she will then have a complete hysterectomy and then have reconstructive surgery of her breasts; Merry Christmas and Happy New Year.

He went on to say that he had been without work between July and October but had found a new job that he is enjoying if at least for the income, but he was happy to have work as Dawn has been unable to work for obvious reason; their son Jack, 8 years old seems to be doing well.

I asked if he had a cake and meal as my concern turned back to him and his birthday; he explained that some friends had brought a cake and that Dawn attempted to fix a nice meal, but she became sick in doing so; so he went out and picked up something to eat. I told him I would fix them some meals so that he didn’t have to worry about cooking after working all day and so Dawn wouldn’t have to worry about it either.

In my mind I am thinking that their son is 8 years old and needs to eat a good meal after a busy day as an 8 year old and hopefully this is one less burden on Steven and Dawn’s plate. I was also concerned about groceries and household supplies but he told me that Dawn’s coworkers had brought over a ‘truck load’ of things and that my offer of some meals would be sufficient for now. I also assured him that we would prepare Christmas dinner for his family.

Last night he stopped by to pick up the meals we had prepared, his eyes red as his hair I could tell that this entire ordeal is an emotional roller coaster for him, but it was good to see him and he was very grateful for what we had done.

This was the first time I have seen my brother in well over two years; he has a family to care for and so do I and even though we live so close to each other, we are not very close at all.

Cancer is such an ugly thing; Steven and I lost our father to cancer 26 years ago and as we have grown older (thankfully) we have lost friends and family to this deadly thing.

I pray for Dawn to recover, heal and survive, so that my brother’s tears are those of happiness.

And I pray that all of you will reach out to those that mean the most to you; if you need help seek it and have you have help and love to give, please give it.

Kyle likes chex mix

2010-12-20T20:31:00.000-07:00

Life Without Ego, Imagine That

2010-12-16T14:37:00.000-07:00

As I was getting the boys ready for school this morning, neither of them wanted to brush their hair or teeth; to which my wife responded ‘boys, don’t you care what others think of you?’ Both of them stopped for a millisecond then went back to eating their breakfast, an obvious ‘No’ being the unspoken answer. My wife continued, ‘you may not care, but I do and you will brush your hair and teeth.’ So they did brush their hair and teeth and as they entered the bus, they both messed up their hair as if to say, ha-ha mom, we like the way we look just the way we are . . .

I’ve never received a report from school stating ‘Dear Mr. & Mrs. Krei, your children came to school today and their hair was not brushed, please refrain form sending your children to school with unruly hair’, not once in the last 10 years have I ever received such a letter. And keep in mind that at home, Kyle & Hunter are mostly likely seen running around the house in T shirts and boxer briefs and if you come knocking at our door, you best be prepared and unsurprised to find them that way.

Another thing that my wife insists is that our sons wear ‘outfits’ that mirror each other; first off boys don’t wear outfits and secondly they don’t give a snap if they are wearing the same clothes only in different colors. Just for the record, we do not dress our identical twins identically.

Why is it that we humans care so much about what others think of us that it drives us crazy just thinking about it. Seriously . . . imagine for a second what would happen if Brad and Angelina stepped out of their mansion to jump in their Bentley and nobody cared because quite frankly, who are they really? I for one do not look around every morning I jump in my Mercury Sable and wonder . . . how do I look? Did anyone see me? Where are all the paparazzi? I do look into the mirror to make sure my nose is clean, literally.

The average estimate themselves by what they do, the above average by what they are. Johann Friedrich Von Schiller

One of the ‘hot trends’ today is ‘Branding’ but I wonder if those that proclaim they can ‘help you brand yourself’ are teaching from the front end or back end of that quote. Be careful out there.

I may appear to have weathered many years, but my soul is as bright and warm and inviting as the sun.

Need a good laugh? You can laugh at me!

2010-12-13T11:10:00.000-07:00

Technically speaking I am what is called ‘dangerous’; you see I have a web site that I thought I was posting blogs to, both via blogger and my dot org site, but as it turns out they were only posting to www.kreilife.org silly me.

So if you look at my picture and then look up the definition of . . . oh never mind, I think you get the idea. Or how about this for a topic, “How to create confusion by creating a Blog that might get read if you are completely lucky’.

Anyway, if by chance you are interested in reading any of my prior posts; you will find them at my dot org address, from here on out, they will be posted on BOTH, until I figure out a way to get my blogger account to export to my dot org; so if you like charity work and you don’t mind dealing with someone that doesn’t know what he’s doing . . . let me know. I need all the help I can get.

Remember, a laugh a day keeps the blues away and I am always only one laugh away!

Community Center Board Service Provision

2010-07-12T12:56:00.000-06:00

I wrote and sent the following to Mayor John Hickenlooper and Mr. Scott McInnis, both are seeking election as Govenor of Colorado:

Gentlemen;

Both of you no doubt have many issues and agendas to prepare for as you seek election as Governor of Colorado. One of your major concerns without doubt has to be the developmentally disabled community; after all Colorado consistently ranks 46th or lower in the nation in regard to available funding for services for people with developmental disabilities.

Before you deliver your prepared response of ‘we are in a recession’ please consider that it doesn’t take more money to operate a responsive person-centered system, it does however take a common sense approach to reduce the amount of time and money that are now being spent on record keeping and red tape instead of service provision.

State wide budget cuts along with rules and procedural changes are disabling the very Community Centered Boards (CCB’s) that are intended to serve the families, individuals and community affected by developmental disabilities. Many of these CCB’s have survived by their ability to maximize available monies and remain focused in their dedication and relentless efforts to serve the people they believe in, the developmentally disabled.

As a father of two children both born with Down syndrome, I ask you to consider this; the wait list for services in Colorado also ranks 46th or below, my children, should they outlive my wife and I may spend their entire lives on a wait list. Statistics show that the occurrence of Down syndrome and Autism (to name a few) have increased not only in Colorado but across our great nation, yet the leadership of our state and nation have done little to improve the lives of these individuals. Rhetoric of state and federal ‘cutting edge projects and services that embrace inclusion or integration for the developmentally disabled’ are no more a reality today than they were 30 years ago. Gentlemen I respectfully offer that my children are no less nor no more worthy of every opportunity to a ‘good life’ as your children are.

Again I emphasize that it doesn’t take more money to operate a responsive person-centered system, nor does it take more rules, regulations and government red tape; as an example I have attached page 2 of 55, Program Performance Report from the Colorado Developmental Disabilities Council, please note that the number of persons on the wait list increased fiscal year 2009 by 967 people.

The CCB’s of Colorado do not need more reports, guidelines or State appointed personnel to report to; the CCB’s of Colorado need common sense from the leaders of our state government. My children, the children and adults within the community of the developmentally disabled are increasing and yet the services they receive are decreasing all the while the very service organizations established to serve them are being suffocated. Please stop the madness and apply some common sense; here is my suggestion:

Meet in person with each Community Center Board Executive Director to determine what areas of the Colorado government are hindering their ability to serve the people they are intended to serve.
Meet with the various multitudes of government personnel that create the hindrance; determine whether or not that this person, persons and or department(s) contribute or detract, support or derail those they are meant to serve.
Spend one day personally with an Adult Day Services program director from the CCB of your choice. Then spend one day with the parents of one of the families that send their child (adult) to that Day Service Program. Then spend one day with the parents of a child (adult) that is on the wait list.

You can see where I’m going by now, but in case you don’t; eliminating an office or department that is obstructing in the care and service of a community of people that are more often forgotten than revered as fellow human beings is a disgrace and any government official that hangs his or her hat on the fact that they create reports and red tape as a form of job justification have no place working for tax paying citizens of our great state.

Thank you for your time and consideration; should you wish to discuss this with me further, please feel free to contact me.

Kelly Krei
3591 E 134th Dr
Thornton CO 80241
(H) 303-464-1423
(W) 303-463-9800
Kelly@kreilife.com

Thank you for reading, remember to vote!

Inspired or Motivated; which would you rather be?

2010-02-16T19:09:00.000-07:00

I often wonder whether most of us would rather be inspired or motivated? For me, motivation is a given; it's comes in the form of bills, house payment, twin boys that need food and clothes and a beautiful wife that likes to be able to go to the store without a budget or shopping list.

Inspiration is another sort; what gets us through the tough times, keeps us going, gives us hope, helps us keep living for the dreams we hope to live?

How about you? If you had to choose 1; would you rather be motivated or would you rather be inspired?

The Trials and Triumphs of Down Syndrome

2010-02-12T12:45:00.000-07:00

Now available via csnbooks.com thank you for your support.