Autism And Its Challenges

luke at ATPLuke’s autism is a story I have chronicled so you could see the challenges we face. This disorder comes with a big price and it takes much determination to succeed. Along with Luke’s disability, he has significant cognitive delay. His mental age in my opinion (his mom) is about four years old. The question by some may be, “How does one live like this?” The answer is, “It depends.” For example, many people have their own commentary of quality of life. We all have “our truths” about that subject. So do we impose our idea of quality of life on the one that is actually suffering, yet he does not even know it? My perspective is pretty simple. Life matters. No matter at what stage or age you are in. Life matters. Why are others quick to pull away from their responsibilities? See what you think of my example below as I describe a week in the life of a mom and her son trying to find medical help. Sorry medical professionals–you seem to get picked on by me a lot.
We have had quite a week dealing with Luke’s need for dental surgery. I spent undo precious time trying to find a doctor willing to do the surgery for Luke without giving him General Anesthesia. Finally I found an oral surgeon willing to take the chance to do the procedure in his surgical suite under IV sedation. I am very grateful that Luke was taken care of there and the surgery was a success ( no general needed!).
The post op journey has not been easy though, but I believe we may have made it through the worst of it. We make a third trip to the dental surgeon this week, and I hope that will be it except for routine cleanings! I think Luke would agree. I wonder how many people could go through the agony of hearing from one doctor’s office after another not willing to care for Luke.
I say Luke will endure and maybe Mom will too! I am glad sometimes he does not understand the discrimination he gets. So many are still ignorant that Luke is human and made physically just like them. Anyway, this is just one example of how autism impacts families and brings undo burdens that should not be there.
There are dentists who actually say: ” I don’t take care of that kind of medical issue (even though they do) because there are “others” who will. I wonder which dentists are the “others?” For now our other was Dr. Sorenson. He was great as well as his competent staff and front office. In the photo –you will see Luke is still smiling!!! He always will.

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14 thoughts on “Autism And Its Challenges

  1. janjoy52

    Jesus said whatever we do to the least of these, His brothers, we are doing it to Him. I like to look at all the people that cross my path and ask “Is that really You in there Jesus?” He comes is all kinds of disguises: cranky, aged, helpless, hurting, lost, joyful, questioning. Then I accept the challenge and say “How can I help You?” This was Mother Teresa’s motto. This, for her was, and not for me, is the joy in serving. This makes the burden easy to carry.

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    1. alesiablogs Post author

      Beautiful and eloquently stated. You know one thing I can say is that I do believe most folks really do want to help. It is that they are not sure how to help. I appreciate a doctor, for example, stating what they do not feel comfortable with, but if you went into the field of medicine you have a duty to do your job. Thank you for your kind comment.
      Alesia

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    1. alesiablogs Post author

      Heidi,
      The doctor looks like he is 20 years old! He had great staff and they all made us feel at ease and just like any other patient in the waiting area. That is all I ask for. Do your job just like you would for any other person!

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  2. Donna S

    That is great that you were able to find such a willing doctor. Educating people on various disabilities would alleviate a lot of the problems that parents of special needs kids face. I truly believe that there is a 6th sense that most everyone has and we consciously or subconsciously pick up on those vibes. Kudos to that doctor and your perseverance in finding the right oral surgeon for Luke!

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    1. alesiablogs Post author

      Donna,
      It does take a doctor extra time and I was grateful he was up for the challenge. I stay with Luke the entire time until he went to sleep and that was really good for Luke. I helped during the IV start and so forth and Luke was just a champ. He may not have fully understood what was going on, but the fact I was allowed to go back and talk in his ear the whole time ( familiar voice) was comforting to him I believe. It was easier on the staff too.

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  3. Genevieve Petrillo

    Long ago when I was a young teacher, I wondered if I was up to the task of teaching a blind student in my sighted classroom. I had more questions than answers. The biggest question was, “What does he need from me?” I found out quickly it was – …exactly what everybody else needs from me. He just needed to be accepted, given only as much help as was necessary, and to share in the learning, laughter, and caring in our classroom. Just. Like. Everybody. Else.

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  4. Garden Walk Garden Talk

    So much credit goes to you because without your persistence and patience, Luke would never have had the quality of life he has had though the years. I know you are the mom, but it really takes a special mom to have all the trials you face daily with a son not understanding much that is happening to him.

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  5. Anne Copeland

    Dear Alesia, I can so relate to this frustration, among your many others since I have worked as a substitute aide, a paraeducator and a teacher (taking care of a group or being a one-on-one with children who have severe autism and often other physical challenges as well). You will see that I consider autism a physical challenge for a good reason. I ran a small nonprofit for more than 10 years to help physically challenged fiber artists, and most of these were very extreme cases (severe). I helped them with exposure for their work and also teaching them professional development. One time we had an exhibit from many women who began to call me to ask me if I considered bi-polar, chronic depression, fibromyalgia and other things were a physical challenge. My response was always the same: “Well, it sure isn’t an out-of-body experience, is it?” Just being able to be validated for what they had was enough to help a lot of those women move forward with their art at least, even if they tended to stay isolated in their homes. At least they were creating.
    So I have years of experience with physically/developmentally/emotionally challenged children, young people and adults. One of my friends is a paraplegic from being shot point blank and nearly losing her life. She was 3-1/2 months pregnant, and miraculously her son was born, and she now has grandchildren. She is a senior now like me, and recently she severely needed some dental work. She went to the dentist and they refused to treat her because she is not able to get out of her wheelchair. So this means that a lot of people in wheelchairs are being refused treatment. She luckily was finally able to find one who was able to adjust her chair so that she could get the work done that she needed.

    Lots of people unfortunately are denied dental care because of one issue or another. It is truly sad, for they deserve to be able to get the physical care, be it dental or other physical care.

    Having worked with autistic children over the many years, I have also been hurt by a number of them. I was punched in the nose, had my glasses broken, got bitten and pinched numerous times, and got kicked and punched in the stomach. But I never gave up. I tried even harder to work with the particular child who did the damage. And it paid off too. A lot of times with my children, if the teachers forgot the child’s routine and we went on a field trip, they could almost be sure the child would have an episode. I had a boy as big or bigger and heavier than I am and he was generally very good, but when his routine was not followed, he got really upset. He did his puzzles at a certain time after he ate his macaroni and cheese every day. I always thought he should eat more things, but his parents wanted him to have only macaroni and cheese. So when we took the children to the beach, the teacher decided that he could eat something different, and that was his first upset, but the real issue came when he could not work his puzzles. I tried to get him into the marine (ocean) museum where they had some puzzles, but they were closed, and he knew those puzzles were in there, so he suddenly attacked me, bloodying my nose and breaking my glasses. But it did not change my mind about working with him. So there can be lots of things that drive the child to have a major violent attack, and there are lots of ways to get them to calm down without restraining them too. Sometimes we would run very fast around the playground, and sometimes my child would get on a swing, and I would push the child, counting up and then down. I did a variety of things that I thought of that would not hurt the child and might help him or her. Some worked very well, and others did not, but I always kept trying.

    It sounds like you are doing an admirable job with Luke and he is so lucky to have a mom and dad like the two of you. I hope in our lifetime, we will see a cure or something to really majorly make a difference in the lives of autistic children and those with things like bipolar, etc. Keep up the good work, and I know it is very hard on the parents especially. Many parents with autistic children don’t want to try to work with them; they always hope that others can do the work, which they can, but the problem is that there is no consistency for the children when they are alone with the parents, so they don’t always make good progress.

    I wonder if a place like Goodwill might be able to train Luke to do a job. In my area of So. CA., we have a lot of work and independent living programs for the special needs youth. Some work in factories, and they are, as you noted, excellent workers. Some of the children here do volunteer work too, and they are quite happy with what they do.

    I wish you the very best in your advocacy and work. You are truly admirable parents for not giving up.

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    1. alesiablogs Post author

      Thank you for your kind words. Luke has worked for good will. I hope soon he can go back to working there as it was his last job before he was hospitalized . I am sorry also you have been hurt . Luke and others are strong and although they do not mean to hurt us for the most part–they still do. We have to just move forward as you have done . Thank you for reading and enjoying my blog.

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