Autism Awareness Month begins on April 1st and ends on April 30th. Everyone around the country, in recognition of this are asked on April 1st to put a blue light on their front porch light. For those families affected by autism, there is no end or beginning date. They live and embrace the challenges of autism daily every day of the year.
This diagnosis is a on a spectrum so is not as clear cut as the news would have you believe. Autism is also not something fairly new. According to Bloomberg Business Report in 2014, it affects more than 3.5 million Americans, many of these are adults. The costs are monumental, creating a hardship for many families. Some support givers are unable to get the needed treatment for their loved ones if their insurance plans won’t allow it and if their state laws won’t cover all of the needed services. And the individual costs of care and education are astronomical. For an autistic child without any intellectual ability, the costs are estimated at 2.2 Million dollars and with the ability to function intellectually, the costs drop to 1.2 Million dollars per person.
There seems to be a misconception in society that autism only affects families that have an autistic child. Thus the issue has been continually disregarded by communities at large and not a popular political issue. However, even back in 2012 a study done by Autism Speaks published findings that it was costing our country over $137 billion on autism. Much of this cost was with adults with autism who are unable to get work or support themselves. Current costs are $175-196 billion dollars. If that figure is not astounding, note that the Autism Society Organization has found, in recent research, it will be over $200-400 billion to our nation in the next ten years.
There is a proven method to reduce the overall costs over the lifespan/care of autism. The critical key is early diagnosis and intervention (Autism Society Org.) Estimates are showing the reduction to be as much as 2/3’s of the total projected costs per individual. But, the early intervention will only work if parents are educated by being informed about autism, are proactive in testing and have school systems willing to work with children and parents. It is also reliant on funding being made available to families be it through insurance companies and/or legislation so that those with diagnoses can use whatever methods they need to obtain the therapies that best progress them to optimum performance.
I have been on the side lines and watched a family grow in knowledge, spirit and faith in this world. I do step in when I can but as a grandparent my role is limited to support system/cheerleader. As my son and daughter-in-law have been involved in this special class of children, I have known a higher level of pride in each of them.
Many of my followers know their story so I will stick to the highlights. Rebekah, my daughter-in-law, immediately felt something was amiss first with her middle child Ty and at age 2 set him up for testing. Her youngest child Jake, even though his development was going forward, she saw some signs that concerned her. Thus she set him up for the same testing at a hospital, those tests to determine if he had Autism. The two young boys had the diagnosis, different degrees, not identical but nonetheless, autism spectrum. Never one to hang their heads in sorrow, they both jumped on the bandwagon immediately.
Rebekah and my son Mike do what many of these families have to do, dig their feet into the ground and begin running. I can’t speak for them and I won’t try. First with Ty and then with Jake, they got the best therapy, trying one after another until they were satisfied with the progress the boys were making. This is a continual process for them, reviewing and evaluating that never stops. There is never time off, no vacation, no breaks. These boys are constantly learning and on routines, thus Rebekah’s job is hands on deck pretty much all the time!
In addition, both parents try to reach out and learn as much as they can in the field so they are abreast of all new information that is on the forefront. They want both of their children to have the advantage of whatever is out there. If it means extra-long days at the office for my son, he does it without hesitation. Sacrifice, large sacrifice, is what having autism in your household is about.
Rebekah continues networking with other mothers who have children on the spectrum. She does this for multiple reasons. It provides a mutually supportive system for her and other women. This also is a great learning tool for her and other moms. Many newly diagnosed children have mothers who don’t know where to go, how to cope, what to do. Mothers like Rebekah can get them started on the right path and let them know there is a rich full life ahead of them! She lets them know her boys are thriving. See, my grandsons are not missing out; she makes sure that their lives are full. They are the ‘American family’ with a few modifications.
However, the costs are great for autism to a household budget! Noone in their household complains but I have ran the numbers. Costs of treatment are staggering. Therapy is often one on one for autism thus, extremely expensive. When a parent makes a good income, the assistance level goes down. Thus, since my son is a professional, his assistance is limited. Out of pocket expenses add up quickly. And the amount of time my daughter-in-law spends taking children to and from treatment and meeting with therapists is monumental too. I hear parents complain about a parent-teacher conference. Two times a year for fifteen minutes. Oh, if Rebekah only had it that easy! She had to drop out of nursing school when attending on her GI Bill after serving in the Air Force because the children’s schedule was just too demanding for her to do anything but attend to the children. This is common place for autism. Many parents have only one parent working due to the demands of caring for a child and thus are limited to one income and one parent basically spending 24/7 providing around the clock care.
If you haven’t had children with autism you don’t know what it is like raising one. You may think you understand, you may comprehend the spectrum, the common nuances but living with it day in and day out is totally different. Ask the parents that have these children. They can give you a reality check. They are special too, make note of that. Yes, the children are blessed children but the parents are hand-picked also.
Celebrations in these homes are over the smaller things in life. Many of the accomplishments are the tasks mothers take for granted. Examples are a child dressing himself, a child potty-trained, and a boy speaking. Sometimes Ty ignores his birthday gifts preferring instead to simply jump on the trampoline in the backyard. Rebekah went for years without hearing her son, Ty say hername. Finally one day she heard “Mommy.” Not long after she heard “I love you.” And then it all comes together with a kiss preceding those words but her wait was long and hard to hear her little boy say something so little but yet something so special that every mother dreams of their little boy saying to them. Can you imagine waiting years to hear this?
When April rolls around, keep these children and adults in mind. Autism matters. My grandsons, all of these children and adults deserve attention. They were not asked to be born this way. God created them the way they are as he created you and I. Perhaps it was to test all of us to see if we would care. Can we go outside of ourselves and love other individuals who have a harder time dealing with the outside world than us?
If each of us could be more aware of any legislation that comes down the pike that promotes issues related to autism, it would make a difference. We need, as a society, more early interventions so children are diagnosed sooner. All children need coverage for the newest and greatest therapies that are out there and the means to obtain it. Our communities stand to benefit from these improvements. It is the right thing to do, thus, will you turn your light on and go blue?
I have often wondered why it is hard to let go of a relationship when the pendulum only swings one way. So many of us find ourselves in relationships with people, be it friendships or family members where we are always feeling negative emotions inside and yet continue to reach out in the hope that something will change.
I think there is this faith that with persistence there will be a different outcome. Our culture has taught us hard work pays off. The only problem with this is that we are not capable of changing other people, only ourselves. We can’t affect how other individuals react to us, the dynamics of a relationship. We can only affect our side of the paradigm.
Thus, we can come at it different ways, try different methods of communication, and change ourselves. If the acceptance of self, our true identity is just not there by the other party, this relationship will be hard to savor. No matter what the tie is, the amount of effort that is put into the relationship should be minimized. The cost to one’s emotional well-being is too high to justify the interaction. It is far better to spend energy on relationships that are healthy than expend energy on ones that are unfulfilling and leave you feeling as if you need a therapist.
We have a tendency to also analyze the people who are somewhat rejecting of us, using us or just honestly, not givers in the relationship with us. Some people will not want to love you, care about you or feel vested in you. This issue may have nothing to do with you. Even if it does, there may be nothing you can do about it so it is best to let it go as opposed to letting it tear you up inside. Don’t take someone else’s inventory either trying to figure out their short comings or their perception of you. Simply let it go and make the relationship a lower priority and focus on the ones that are mutually rewarding.
Life is a gift. The gift was given to each of us to be savored. You, the creation of you, was one of those gifts. It is to be celebrated. If someone in your life does not find you worth celebrating, move on to someone who does find you worthy of a party.
I will never forget the day I decided to cut all my hair off and go to short hair. I did it without looking back even though, doing so, my face is so visible. For so long, my hair has been long. I think having long hair was a way of hiding my face from view. I never really have liked the way I looked. I have always been rather plain, seeing myself as ordinary. Oh, and I have detested my thin, lackluster hair.
When I had cancer, I dreamed my hair would come in luscious and full. Infact, I prayed God would bless me after that ugly battle and reward me with the hair of my dreams. Initially, it seemed he had granted me my wish but lo and behold, it eventually grew to its original state, limp, lifeless and fair.
I began to see a connection between my hair, my face and my inner self. I had spent most of my life trying to be as perfect as I could. Perfect to me, included being as thin, as good-looking as I could be, smart at everything I attempted, the best at everything. I wanted to always have my father be pleased at everything I did. With a mother that had walked away from me as a child, I felt partially to blame. I felt as if my stepmother saw me as a misfit and didn't care. My goal was to make my dad proud and somehow have my stepmother see me as someone to be proud of.
In striving for perfection, I made top grades many times, even hitting a 4.0 a few times. I was on drill team in high school, double majored in college as a non-traditional student, accelerated at various jobs, and raised two successful children giving it my all, making many sacrifices along the way.
However, I also, on that course of trying to please had failed marriages, let myself down repeatedly, stressed myself out countless times trying to hit unrealistic benchmarks, let many of my unhappy memories get stuffed down inside of me instead of dealing with them in therapy and somewhere along the way, began to lose myself and become more what everyone wanted me to be.
Post cancer, post therapy, I had an ah-ha moment. Much prayer, much reflection and time away from working, it hit me. I believe strongly the hair cut helped. I decided it was time to quit hiding my face.
Whether I am beautiful or not, my face needs and deserves to be seen. I am who I am and I accept me for exactly who I am. I am not beautiful anyways because of how I look on the outside, I am beautiful because of the same reasons my friends are gorgeous to me. Beauty is because of how I treat those around me and how I live my life. I am free now, I am not living up to expectations of anyone anymore but the goals I set for myself and those are reachable. It may be disappointing to some but I am living in total reality, no longer hiding anything. I no longer have to reach for the stars either, unreachable goal-setting. I can attempt to do things I feel I can and want to accomplish. I can reach out and instead of trying to do the impossible I can now help others reach their dreams.
Age and time has its benefits, a wisdom all of its own. Wow, I am so enjoying all the moments that come my way and seeing so much of God’s great creations and people he has made! And I am one of them, a work in progress, even still. Hair is an object, nothing more. What I am is something so much more that hair I use to hide behind, there is depth behind my face.
So much emphasis is put on women to be beautiful that it is becoming important to understand where true beauty originates, from within. We all are created equal, by God. In His eyes, we are all beautiful, made exactly how he destined us each to be.
However, once outside the womb, in the real world, society puts these unrealexpectations on females of what the standards should be. Most cannot hit that mark, that goddess image that marketing agencies seem to push on the make-up ads, the perfume commercials, the women laying on the beach wearing skimpy bathing suits that many women can’t fit in. These benchmarks are traits that women are either born with or without, having no control over the later. This is simply an unfair stick of measurement to evaluate the true beauty of a girl or woman.
The definition of beauty for a woman needs to begin at home, in the confines of your family. This essence should be discussed with children, of both sexes, as they are developing. The topic will help formulate ideas forcing current and future generations to be more open-minded to those school aged girls and women that are not the epitome of a marketing firm’s idea of ‘beauty.’
This is more important than ever with bullying reaching epidemic proportions.
Too often I am asked by recently diagnosed breast cancer women how losing a breast will affect their femininity. Will their mate find them desirable? Is it not unfortunate enough that they have to fight off cancer but compound it now with fears of their essence of being a woman questioned? So many feel their beauty is fleeting. Large breasts or any breasts do not make a woman. Appendages on one's body do not make a woman more or less beautiful much as a penis does not make a men attractive or unattractive. Women are attractive to real men because of what lies within and radiates outward. Character, integrity and sensuality does not come from physical looks.
Please consider coming up with your own definition of beauty and share it with others.Make it based on controllable factors and recognize we are all created as part of God's perfect plan You may be saving many other women from heart ache without even realizing it and people from persecution.
Please click on link if interested in my video on the diversity of beauty in my small world of women I see: Click Here
I sometimes forget how much my grandsons are growing up. Having them overnight this weekend, I am overjoyed at their changes. It is as if every time we see them, there is something new to uncover in their development. And yet we fully know the next time, there will be more to discover.
What a joy to be able to still see the pure happiness as simply getting attention from us,their grandparents! Nobody else, but our dog, reacts quite that way to being around us. It so reminds me of the love and happiness I felt so many years ago on those nights I spent with my Grandma Gliatti. She gave such undivided attention to her grand kids that it made each of us feels, at times, as if we were her favorite.
The two boys, just like my cousins, Ty and Jake are as different as day and night. And their preferences of which of my husband and I’s attention they lean towards are too. The younger one is all about his Grandpa Jim. Jake will try to taste anything on his grandpa’s plate, wants him sitting next to him every minute of the day and just can’t seem to get enough of his attention. The admiration is adorable to watch. Jim is so mild mannered and this little boy is so exuberant around him! With grandpa, the answer always seems to be yes, he can’t easily say no to someone so darn cute! Jake wants on his lap and wants him laughing all the time and proud of who he is. And his grandpa is, extremely proud of who Jake is developing into! When he comes to grandma, I take the backseat.
Ty, the older of the two, seems more sensitive- natured, like my son was as a young child. He is attuned to Grandma. He will listen to pretty much anything I say if he needs corrected. If Grandpa wants him to do anything, he will listen but his preference is always me. He will come up on a whim and love on me, make me put my arms around him and smile his engaging way that melts my heart. He listens so well, obeys instructions one time stated and wants to always check on where I am at in the house.
One of the biggest changes we saw is the sibling rivalry, the boys tufts. As grandparents, it should be rather annoying, the arguing. For some reason, it is somewhat amusing. We
know, from watching their parents, they don’t always intervene. How amazing that already we are seeing their ability to work some issues out on their own. We looked at each other as if to ask, how did that happen? Mind you, this was not an occurrence every time! Watching a 4 and 5 year old argue is educational as their verbal and reasoning skills are not quite up to par. But it is a reminder of the importance of conflict resolution and how it is experimented first at home as a youngster, so normal that we all go through it.
At times, they can fight and be unrelenting in their demands. Other times, they totally acquiesce to each other. And in the middle is our 115 lb. dog who had no idea what to make of it. He backs away so as not to get caught up in the battle. We think Charley was afraid to take sides because he just loves them both so much. But he stays close by because he does not want anyone to get hurt or see anyone cry.
We have no idea why but at this stage in our grandson’s development, they can ward off our
dog fine on their own. We are baffled at how that happened. It seems like just yesterday we were still yelling at Charley go leave them alone or locking him in the bedroom as their food is within his snout’s reach.
This visit, both boys let him have it if he got near their food. Charley even seemed to he sense these big boys were not going to take it from him. They each have their own style but they reprimanded him themselves and he acted as if he was shamed and would quietly retreat, eventually laying down. His disappointment over our grandsons calling the shots was evident in his demeanor. No more easy fixings on food.
No matter what goes on in our lives, their laughter makes the world seem brighter. There really is nothing more rewarding than being around children that you know come from a loving home and are getting fostered in a way that lets their personality shine through. Jake and Ty have that, all that and more. The joy they feel in living is contagious and shows in every move they make. Children need and thrive in loving homes and environments. All of us can affect children and the future by helping stimulate that vibe in children we come in contact with whether we are related to them or not. Do your part, be attentive to a child.
P.S. Surviving cancer gave me this opportunity, to be a grandmother. Not a day goes by that I don’t thank God for that blessing. I hope I leave my grandchildren with wonderful memories like my grandmother gave me.