Richie's Story

My son's name is Richie. He is going to be 20 years old in May of 2003. Funny, I always thought I could write a book on him, and our family and daily living, learnings, milestones, happy times and sad times but I am speechless right now.

When I was pregnant, I was really sick. I only gained 15 pounds during my whole pregnancy. I felt like something was wrong but had no testing done. My doctor thought I was a nervous first time mother, which I am sure I was but I just had a feeling that something was wrong with Richie.

When he was born, he was only 5 pounds. He was so tiny. We had him tested at 5 months of age at the University of Colorado, Genetics Unit. At the time there was no information, other then a paragraph here and there. He was our first baby and I was a very young 19 year old. I think I aged instantly when hearing his diagnoses.

As you all know, there are many, many times of celebration along with the times you feel alone. Richie is doing very well. He has been attending school since he was 2 years old, and had home training before that. He will be graduating high school next year and talks about going fishing with his Papa.

We lived in Casper, Wyoming when Richie was little and it is very windy there, he was always in the hospital for his asthma or bronchitis. With time, his asthma has gotten much better. He has been involved with the Shriner's Hospital in Spokane, Washington. Richie's elbows and knees are hyper extended. He had ACL surgery on his right knee a few years ago, but that didn't work. The only option left for him is to remove his knee and fuse his two leg bones together causing him to have a straight leg. I just have not come to that decision yet to have it done, I find it so hard to choose that for him. He does rely quite a bit on his wheelchair and so far, that seems to be working for us.

My family: sister, grandma and grandpa are all so helpful and loving. Without my family there are times that would have been so very hard to go thru. Richie's father and I divorced years ago but with my family support and encouragement, days are easier. I sometimes feel sorry for myself when I think of the things Richie will never do, like getting a simple phone call from a buddy to go play some football, or take his girlfriend to a movie ~ in those times I allow myself a good old fashioned cry and email my friend Debbie, another mom of a 4xy boy. We met online years ago but have never met face to face but our friendship is a strong, true one.

Richie has a sister, Kelcie, who is graduating this year and is planning on attending college in the arts field. He also has a much younger brother, Michael, who is in the second grade.

Richie is a very happy, loving boy. He loves gospel music and loves to sing out loud. He has a horrible problem with eating anything and everything. He eats string, paper, parts of toys, just about anything he can and because of this, gets quite sick. I have not found out how to stop him from doing this and neither have the doctors.

I often have people ask me how I stay so bubbly, how I manage day to day life. I guess my answer is: I don't know it any other way. To all of you out there, if any of you would like to email me, please feel free. My name is Kim. Funny how all those years ago I felt so isolated, and now with the internet ~ I see you were there all along

There has never been a day since Richie was born that we have not felt truly thankful to have him in our family. What a joy he brings into our lives. Yes sometimes he does things that make us wonder what is going on, but he is so happy and can make us smile at just the simplest things.

As a baby he was always so happy and his smile was so big. I believe that God gives certain families these children because He knows they will be loved and cared for just as He would love and care for them.

Richie loves to sing gospel songs with his Papa, especially the Gaither songs and he likes to watch them on TV. Some of their songs he knows every word.

Hello! I have been blessed with being Richie’s teacher for the last 4 years. He is a breath of sunshine that is often underestimated! When I was first told I would be receiving a boy with severe mental retardation caused by 49XXXXY, I hit the panic button! My class was already a “tuffy”! It was my first year at the high school, and I had no clue what I was going to do. At first, I was dismayed that the school near his home would require such a long bus ride for him to attend my class. Then, he arrived…………..

We welcomed Richie by baking a cake and playing Uno. The ice was broken! Richie loved cards—and he knew how to stack a deck! He was instantly well liked by everyone, but we watched how he dealt the cards. The game episode was my first clue Richie understood his environment. There’s a lot more to Richie than what people might assume. One must look beyond what he or she sees…..and hears.

Richie can be extremely difficult to understand. Part of his disability affects his speech. However, his receptive language has developed far beyond his expressive. Like many children, Richie knows how to manipulate his environment. He uses his disability to seek attention and maneuver things his way. He understands when another is in pain or feels sympathetic towards him. He uses situations such as these in an attempt to avoid a task he may not feel like doing, to avoid joining a group when he would rather vegetate, or to simply direct attention toward himself. Sounds fairly “normal” to me. The expectations for Richie’s goals and behavior have been raised. He knows he can reach them; I tell him so, and he understands.

Richie Hughes, born Richard Eugene Hughes named after his grand fathers. I remember the day well, and still get teared up when I think about the thrill and joy I felt when his mother gave birth to this great kid.

I remember much the same things his mother has written about, she was sick and she carried Richie as I remember it for a week or two longer then term.

The news came to our family like a lead ball dropping in our chest. I remember feeling less then adequate and much a failure for fathering a child with a disability. Over the years Richie developed slower then others but was always active. I remember him riding a bike at a fairly early age and I believe I even have a photo to prove his stunts, by standing on the seat as he rode down the side walk.

As his mother writes we divorced when Richie was 5 and I did not get to spend much time with him as they moved to another state. The times I did get to spend with Richie will truly enhance my life much more then any other event imaginable. Richie, as his teacher writes, is a master at reading people and getting the required attention when he wants it.

I am picking Richie up this weekend for a trip to Alaska. 09/01/2007. He is so excited to be going with me. We will visit family in Alaska and I am sure I will come home with a new lesson learned in life.

To those that will morn the birth of a son with a similar disability or other disability, I can honestly say that as Richie's grandmother says, these children are truly Gods Special People.

If you ever want to see people with heart and sole, spend an afternoon or a day at a Special Olympics event. Volunteer to take a group of handicapped people fishing for the day, you will be the one that is awarded.

It is obvious that the stress and strain of having a child with this sort of disability was a determining factor of my marital status but if I had it to do all over again, I don't think I would give up having Richie in my life.

I welcome anybody having concerns to write, remember Richie and I will be in Alaska for two weeks so give me some time to answer back.
Kevin

submitted by: chukar_hunter@hotmail.com