Why this fight matters

I realized that with the maelstrom of writing and talking and posting and organizing that people newly arriving at this blog may not have the background on Sean's daily activities. If I may take some time here and paint a picture or two....

Sean's bedroom is at the south east'ish end of the house. His bedroom window does catch the light from the early sun very nicely. Sean's sleeping habits are extremely variable. Most nights he is up 2 or more times during the night. He will come to our bedroom and either make noise or start puling the comforter off so that nancy or I wake up. Sometimes he wants some Gatorade (Fruit punch flavor of course), sometimes he wants his bed tucked in and sometimes he just wants the feeling of company. As the dawn arrives Sean, if he is awake, tends to like to sit cross legged on the bed with his comforter wrapped around him and just enjoy the breeze through the window and the brightness of the day.

What I hope is obvious from the blog is what a happy person Sean is. He smiles a lot, he laughs a lot, he has an absolutely infectious giggle and he loves to play.

As you can imagine external stimuli are hard to come by for a deaf-blind person. Even though Sean can distinguish between light and dark and colors he is, by any measure and legal definition, blind. He cannot get sufficient stimulation via his sight and he gets none via his hearing. Please think about this for a second – sensory deprivation can be so devastating that it is used as a drastic interrogation technique. Lacking that stimulation means that it has to be made up for in other ways – otherwise Sean runs the very real risk of severe mental problems.

The best way is through gross motor activity. Sean loves swimming and walking. Swimming is something that he does very very well. He loves the water, he is safe and supported and confident. He swims mostly in the deep end, taking breaks by just floating on his back. he likes to jump off the diving board. The staff at his favorite pool (Beck, in Aurora Colorado) know Sean very well and they know Doc, Sean's careworker.

Sean swims, walks and goes to Subway for his lunch every day. We picked Subway because he loves their sandwiches and the staff at Subway will load his sandwich with the healthy stuff. Funny as it may seem Subway are a vital piece in our diet plan for Sean (which has worked very well).

Doc picks Sean up from the house at 10:30 on weekday mornings. It is a 30 mile or so drive into Aurora and along the way Doc and Sean take a walk in the park where Doc practices sign language with Sean, encouraging Sean to sign along with him as they walk. Then it's off to Subways for the sammich and then, joy of joys, it's off to Beck for swimming. Doc drives Sean to my work and drops him off at 4:30 and Sean and I bowl on home together from my workplace at National Jewish Health in Denver.

When we get home (around 5:30 or so) I am usually greeted by two large dogs who need to go out for their walk so it is a quick change and then two dogs, Sean and I go for an evening walk. Then it's time for dinner.

That's pretty much how it works during the week. Nancy gets her Sean ready in the morning, bathed, teeth brushed, dressed and so on. She then makes his breakfast and feeds him and gets him set up and in shape for the day. When we get home in the evening she is the one who cobbles together the Sean dinner, who brushes his teeth and gets him set up for bed. Nancy refers to herself oft times as “The Comfort Coordinator” which is a very loving and apt description. Boy you should see her fuss around Sean – getting a soft T shirt for bed time, soft shorts to wear making sure he is one happy lad.

As you can tell, I hope, from this outline, Sean NEEDS the time during the day with Doc. He needs the physical activity the contact with the world. He needs the time away from just being in his own closed off world. When all this activity is happening, he is a happy man. When it gets interrupted, it brings on anxiety and hurt and upset.

The Feds and State of Colorado via the Division of Developmental Disabilities are trying to change all that. They wish to remove over half of Sean's outside time.

Why? Because some bureaucrat invents a scale that other bureaucrats just seem to fall in love with. It enables them to assign numbers to a person, a 'score”. With that score they can interrupt services, deprive the disabled and all with the justification of “the scale”. There appears to be nothing on the scale about whether or not the client is damaged by the actions taken, no way to estimate the destruction caused or the price that will have to be paid.

Allow me to elucidate. If the current plan from the DDD goes ahead, then Sean's active hours will be cut in half. Half of his outside stimulation will be GONE.

I work all day so I cannot make up this shortfall. Sean is way too strong for Nancy to do a lot of physical exercise with. Both Nancy and I are in our mid fifties and we cannot hope to keep up with a fit man of 29. So Sean will be forced back into his own sensory deprived world. And that will make his behavior worsen. Deafblind people like Sean can become prone to bouts of seriously hurting themselves via banging their heads against the floor or walls or punching themselves. We have seen deafblind people so stimulus-deprived that they must wear helmets to keep themselves from being killed by self-head-banging. And is the "quality of service" to Sean and others being given one thought by the administrative procedures being implemented TODAY, July First? Hardly.

The only realistic way we have to control Sean's weight is via exercise – it has taken us five years of working on diet and exercise to get his weight to its current level – the ideal weight for his height. This level of fitness also helps to keep his seizure disorder under control – thanks to his medication and his life style he has been seizure free for over four years.

Make no mistake – this action is going to damage Sean.

This has all taken hard work to set up and then to maintain.

And now – for some obscure reason that we do not understand – and which NO-ONE seems capable of explaining to us, the feds and state wish to kick it all over.

We have written to Governor Ritter – who, of course, did not bother to reply. We have written to our Congressman who has not bothered to reply.

There have been many who have replied – all of our friends on Facebook, our friends from around the country, the Archbishop of Denver, Sean's caseworkers at Denver Options and we thank and love them all.