Can We Change the Future for Autistic Adults?

Most research on autism is performed on children.  The key areas where intervention occurs with children are in behavioral and educational functioning.  In these focused therapies, with children, there is undoubtedly marked improvement over time.   During adolescence or adulthood, mental health issues, such as anxiety and depression can worsen, even while the other issues of autism can become much more improved. Their needs will continue even if their other needs lessen. In some cases, those needs from childhood continue, dependent on their level of functioning.  Many autistic adults will need assistance regardless of the progress they make. 

It is so apparent that there is not much focus on the aging population of autism in our communities, support legally and legislatively for autistic adults, as there is for children.  Frequently, especially with those in the under-served low-income families, there is no support system in place. Even in the middle to upper class families, parents may die without having concrete plans in place because society doesn't have much to offer. The autistic adult can't function as well, if at all, in our world.   They are now dependent on others for aid that will not care to the extent their parents did. Consequently, they are at the mercy of a society that seems to not care as there is no real system in place. In a country where everyone's rights are supposed to be protected, their needs will not be met. Don't we still have a moral obligation to see that this occurs?

Making services available is ethically our responsibility as a civilized society for individuals that can’t provide for themselves. Everyone in our country is entitled to quality of life and this class of people should not be excluded. If you talk to parents and families of children with autism, this is by far one of their greatest worries, what happens to my child when they grow up, when we are gone? 

Some individuals with autism are unable to communicate well and many can’t communicate at all, especially when under stress and anxiety.  Assessment of their needs be it health, mental,  financial, living arrangements, basic care and feeding, should be assessed and  addressed routinely.  If employment can be provided for high functioning adults, this should be coordinated or assistance should be offered so they are contributing to their own well-being, as self-sufficient as possible.

One viable solution is to form Autism planning groups known as APG. Having read about this concept, it seems to be one of the best proactive ideas to date.  These would be committees comprised of concerned individuals from all areas of the community, including healthcare providers, business representatives, religious leaders,general population people, educators,  etc,  to formulate solutions, concrete development schedules, sites and financial backing.    

The purpose of the APGs again, would be to address the growing population of autistic adults’ future health and social needs. By starting the process of beginning training programs for care workers including volunteers for diagnosed, autistic adults of varying functioning levels to thrive at their level, the plan would be in place. Facilities could be built for living arrangements, job training programs could be established with connections to businesses willing to help, and  all the various factors and variables addressed.  The cost of a program in place would actually be far less than the current cost of having no system in place, especially when taken into account the huge growing number of autistic individuals in our country. 

Programs in place to address our growing population of autistic adults within communities would mainstream their needs  and make it  more of a seamless transition.  This will decrease stress to both the individuals, the families and the care providers. Furthermore, solutions will lessen the financial and emotional burden to communities.  It may also provide jobs, not just for the high-functioning autistic adults but those working in these types of programs.   Ultimately the end goal will be met, to provide and give this segment of the population the quality of life they deserve.

Consider that 3.5 Million Americans live with some degree of the autism spectrum currently according to the Autism Society Organization.   According to Advancing Future of Adults with Autism, the anticipation of an incredibly large population of autistic adults is increasingly being called  the "autism Tsunami" .  The economic cost of not having a working system in place is staggering dollar figures. In 2002, it was estimated to be  $126 Billion annually - it tripled by 2006.  And we live in a nation with an increasing debt continually facing cutbacks. This issue has to be addressed and quickly. 

If you are kidding yourself thinking you do not have a personal stake in this issue, caring for autistic adults in the future, because you do not have an autistic child, grandchild, niece, nephew, neighbor, you are wrong. We will all pay for these needs. And every challenge has a fix.  

Delivery of training, assessment, specialists to provide services, housing, drop-in advice, job placement assistance, is possible. It needs focus groups devoted to creating solutions. Consider lending your hand and pushing for your leaders to put this topic on their agenda this year. Quit eluding the autism Tsunami.” Solutions are needed and we must be proactive and not retroactive. Funding and focus is needed. The time is now or your conscious may be at stake.  Yes all lives do matter! Speak loudly, even louder, for those that cannot. 

Johnny Dean's Story

Dean McIntosch, Personal Statement, Adult w/Autism, UK

Autism Changes Like the Seasons

 Fall is somewhat like spring in the north.  Forget about sweatshirts down here; you can still wear flip flops outside. Heck, in the south folks wear them year round, right through the dead of winter.  And on Sunday, the end of September was one of our typical beautiful days that make me fall in love all over again with middle Tennessee.

Last year we spent a wonderful day at Lucky Ladds Farm with the grandkids and their parents in Eaglesville, TN just south of Nashville.  Just when I thought it couldn’t possibly get any better, this year it was just fantastic! One more year of intense therapy for my two autistic grandsons, Jake and Ty Ry and the changes are unbelievable. I am not sure, sometimes they are even recognized as being ‘special needs’, especially our youngest one Jake. 

I smiled with pride as I stood back and watched them both on the Farm.  I snapped away with the camera every chance I got.  My friends, the Lameys say I am like a foreign tourist with my picture taking! With these kids, I want to show the world what a happy family looks like with autism in their life.  My son’s family refuses to let a diagnosis stop them from living life to the fullest.  

As we entered the farm, surrounded by a sea of pumpkins and people, my two grandsons walked on their own this year, no longer shy or having reservations about going someplace new  There were no meltdowns, no heads bent, nothing of the kind. They were as excited as every other kid in line waiting to begin their wild Sunday adventure.  Jake was taking it all in, saying a few words and sentences, at the age of three, much like some of his peers.  Ty was giggling and laughing, just like the happy boy he usually always is; he adapts now so much easier to change.  

Lucky Ladd Farm is stock full of things to see and do. There are farm animals fenced in to feed, a petting area, slides, corn maze, rides and other things beyond this.  Ava, the big sis, in one year’s time has dramatically improved her language skills.  Now she is keeping pass with her kindergarten class that we weren’t so sure she would be in last year.  She easily expresses herself, in no uncertain terms, like every other five or six year old emotional little girl. 

Oh, we stand back and try hard not to laugh, as her parents find ways to lay down the law to their strong willed daughter without breaking her spirit.  But, as grandparents, we cave in. “You want a horsey ride? Here is $5.00, pick out a horse to ride honey, and go for it! ” What are grandparents for? 

Last year, Ty was completely afraid of the animals.  His mom reminded me of this the other night.    This year, our courageous little grandson was amazing, a changed little boy. He was fascinated by all of the animals and could not take his eyes off of them.  He was engaging, feeding them and allowing his

daddy to hold him close so he could get clear access to their mouths and feed them from his hands.  Grandpa and I stood watching, forgetting most of the time to snap pictures.  We were in total disbelief. Where was our little frightened grandson? 

Gone are the two little boys who hated being near others.   This day, thanks to their parents and the therapists’ hard work, these kids mixed and mingled with everyone.  Whatever they wanted to do, climb or see, no one was going to stand in their way.  Anything they saw they wanted to do, they went for it. No tears, no fits, no whining. Even the highest slide was not off limits to these boys.  Each boy went down first with their daddy, my son, gently assuring them they were completely safe and could do it alone.  Next time, he sent them down alone asking them to help him count to three, and down they went!  Not a peep from either of them except as soon as they hit the bottom of the hill, round they ran to climb back up the hill for more.

There was a huge shelter area that had corn kernels in it.  Supposedly autistic children are funny about things on their hands, or people in their space.  Ah, Jake was in that area, front and center, dumping the bulldozer, filling the dump trucks and as far as being around the perimeter of the huge area, no he was not having that.  Even with all the children in there, he was determined to be dead center, and that is where he remained the entire time until I had to drag him out.   And I do mean physically pick him up to remove him because yelling his name did no good. He would ignore us and then respond occasionally with a “No Grandma” because I was not mommy or daddy so he knew he could get away with it!   

It was time for Jake to move out of the pit, so to speak and see more of the farm.  Slide time was now and his mother had instructed me his melt down recovery time had lessened and that he was not to always have his way. I braced myself. His fits in the past have been long and pretty loud and inconsolable. Well, Jake told me no loudly and started whimpering.  I promptly said yes to him, and walked in the middle of the corn pit, swiped him up in my arms, and told him we were going to the slide with mommy and daddy.  Those little feet and legs began kicking.  As soon as I said stop it, they did!  Wow, therapy really does work!  Shocked I put him down and off we went to the slide, with a smiling little guy with no tears to show any discontentment. 

Ty, once notorious for meltdowns, is now the calm little boy his daddy once was years ago.  When he breaks down in frustration, from being overstimulated or overly tired, he calms down quickly for the most part.  I have been instructed what to do and found out Sunday, it works right on cue.  On the top of the slide, I could tell he was getting ready to have a meltdown. When I tried to settle him down, he seemed more agitated with me. I could sense what was coming so did exactly what my son and daughter-in-law have told me to do in the past. I picked him up snugly and when he began kicking, swinging his head, and continued yelling,  I simply confined him up against my body tightly and walked him out away from everyone in a nice quiet area.  I put him down and he was immediately fine!  He literally looked up at me and smiled!  We walked over towards the swings and all was well with the world.   No more long extended meltdown.  What a big boy; I could not be prouder!

Standing out on the acres of Lucky Land Farm that was covered in gorgeous landscaped flowers and haystacks with scarecrows, it looked like a children’s and adult’s playground.  Gone were the worries of the world.  Also, gone were the labels that the world puts on children.    Those silly labels mean nothing; they are judgmental statements that need not apply. 

Please take a few moments and watch the video.  I made one last year also with my blog of the same trip.   It was to show the normalcy that exists in a family that, on the outside looking in, many people think is so different.  I also get asked a great deal how my grandsons are doing. This is an easy to way to let folks catch a glimpse of two very special boys and the loving family that is just as important to us as they are my two grandsons. Without the other three, those two would never thrive. 

This family, Mike, Rebekah, Ava, Ty and Jake have gone through tremendous growth this year. Major progress has been made in therapy. Ty who use to use some sign language, as he was told he would never speak, is defying the doctors. He is speaking some words now.    Hopefully, the images on the video reflect some of the changes in the boys.  Autism in the family requires this, continued work and continued growth.  It is a slow steady progress, with steps backwards, at times,  but more steps forward when things are going right.    It is a constant ever changing journey.

One of things I have learned from my family is that I can never totally comprehend what it is like, on a daily basis, to have autistic children in the home. The best I can do is try, try to understand.  If we all do that, as a family, as friends, as a church community and as a society, it helps. 

Recognize too, my kids never complain. They love their children and would not change a thing about any of them.  We would not, as grandparents, want to change anything either, not one hair on these darling children’s heads.  Our grandchildren are as God planned, like all children are. 

Many children do not have parents who can care and give them the alternative therapies these kids need.  We simply ask that others have compassion and pay attention to the legislation and the changes that need to be made to help these children, their families and the adults with autism to assimilate progressively to the world.  They deserve it.  Having proper therapy to be the best they can be and reach their full potential is imperative as a larger population is going to become an even greater segment of our adult demographics of the future. 

These children and their families deserve to feel like they do when it is a beautiful day in the fall and they are at a pumpkin farm.   Just like the video below conveys. At the end of the day, that is what they are.

                  

                                       CLICK HERE TO VIEW VIDEO

                              

Ty Is a Renegade Making a Difference!

Dear Readers,

An adorable baby boy was born May 29th, 2009. He was welcomed into the world by his mommy, daddy and big sister. This child was unique in a way that many young children are finding themselves likewise. As he grew, his parents sensed something wasn’t right, that their little boy did not seem to be progressing normally through development. They sought out early intervention putting him into therapy where he was quickly recognized as suffering with Sensory Integration Disorder. When he turned two years old, his parents had Ty tested. Their suspicions were confirmed; they were given the heart wrenching news; Ty Ry was autistic.

Since that day, they have embraced the diagnosis, educated all of us and surged forward with determination! They wanted early intervention for Ty Ryan even before the diagnosis. Now they are even more determined that their son will become more engaged in the world he lives in. They want their son, Ty to be a Renegade for Autism. Whatever troubles his mind, his small world, there will be help to overcome it and make it bigger. He is destined to make a stand for others, like him, letting the world know autism has a name, autism has a heart and a soul, and a face. Autism is a reality in homes by millions of families and we must listen. We must care and help these children and these families in our communities to make a better future. You see, simply said, what they want for Ty is what so many families that have children with autism want for their children also, simply what they deserve, a chance for a budding future.

Every 15 minutes a family is told, “Your child is autistic.” The numbers are staggering of families affected by this. Many times, autism is not recognized till much later than Ty, making it much more difficult to treat. Ty’s mother, Rebekah, intends on letting Ty's story be told over and over again in the hopes that some mother will recognize her child's symptoms early on. We must do all that we can to improve the quality of life for these children and get them into treatment quickly and keep them there as long as they need it; it is our social responsibility.

There is no TYme like the present to make a change. Please consider collecting and giving your change for a cause that improves the life of an autistic child. Please give your TYme for children like TY. He can't say thank you YET but those of us that love him are praying, given enough therapy, one day he will be able to!

Blessings to you and your loved ones, Grandma Ronni

INFORMATION FOR THE WALK IN NASHVILLE, TN

Walk Now For Autism Speaks

For Details and to Register for our (Ty's) team or donate to it,
please visit the link below and search on Team Name: Ty Ry's Renegade

Visit:
http://www.walknowforautismspeaks.org/faf/home/default.asp?ievent=463129


NOTE: I wrote a blog on 1/11/11 on Ty Ry Glasmeier. If you glance back and read it now, perhaps you will see, between the lines, even back then, our family had a sense that he indeed was a special little boy. He is our angel and we feel blessed God placed him in our family. Thank you for reading this entry. He warms all of our hearts immensely! Amen.