Faith, Love and Respect for ALL

Posts tagged ‘Autism’

Happy First Birthday Jest_Tu_Positive

Happy FIRST Birthday to Dorothy Stronglove and Jest_Tu_Positive. Today is one year since I started sharing Our Journey with the world through this Blog and its corresponding FaceBook page. It is hard to believe it has been a year already. I cannot believe that the blog has had over 7,200 views, across 73 countries, in that time. I also cannot believe that there are currently 419 people and 139 pages following us on FaceBook, in 27 different languages.  I am humbled and filled with pride all at the same time. I never dreamed that this adventure would become something so pivotal in Our Life, and reach so many people around the world.

The birth of Dorothy Stronglove and Jest_Tu_Positive was a way for me to combat all the negativity I was seeing and experiencing a year ago. It had only been 5 months since our eldest daughter’s diagnosis of Autistic Disorder, and we were struggling to find the right path for Our family.  Between the people in our life who were attacking me about Our choices, and the angry blogs/pages I was finding online, I was feeling overwhelmed, confused, angry and lonely. A former friend helped me see why I was feeling like I did not belong in most of the Autism groups. Her words that made the light bulb go on were: “You are obviously not ready for all that recovery entails…”  When I read those words, everything became clear. The pages/blogs I was following did not share my beliefs, and it left me feeling like an outsider. We do not believe our daughter needs to be recovered, cured, or fixed; we think she is exactly the person God intended her to be. I realized that I needed to find people/blogs/pages to surround myself with, who felt the same way. Although my former friend and I had to part ways, she was one of the people responsible for pointing me in the direction of Our current path, and for that I will always be grateful.

I figured the best way to find like-minded people was to put out there how I truly felt about everything. Thus Autism Proud began; while I was eager to share, I still wanted to protect my family’s privacy, which is why I write under a pen-name and use different names for the major stars in our life. Thankfully I had Marie supporting me, and proofreading my early posts; without her help Jest_Tu_Positive would never have come this far. Even with her edits and assistance, I look back at my early posts and they read as though I am defending Our views. Marie helped me take a lot of the negativity and anger out of my posts, by gently reminding me that for a person who was asking people not to judge others, I was doing just that. With her as my editor-in-chief, and all that I am learning in Al-Anon, my writing has evolved into something more positive and less argumentative/judgmental. Since starting Autism Proud I have found so many wonderful people/blogs/pages who feel the same way we do, and that has helped keep me on the positive side of the road as well. I will not say we agree on everything, because each person and their journey are unique, but I can say that I am learning to be a better me because of them, and I am extremely thankful to have found all these Au-Some people to share our journey.

Our journey is not always easy or simple; sometimes it is hard and more complicated than I ever imagined it could be. We walk in the bright sun some days, and others we are stumbling through the dark rain looking for shelter. Fortunately, most days are a happy medium between the two extremes, which makes for a colorful, Au-Some journey. We try not to take things for granted, and we strive to live in the moment, simply enjoying all the blessings we have in life. This past year Autism Proud has helped me grow as a person, wife and mother; you have all helped me become a better me, and I appreciate that more than words could ever express. I look to the next year with a child-like anticipation for all the wonderful possibilities.

In the coming year Jest_Tu_Positive will focus on Faith, Love, and Respect for ALL. I will attempt to promote unconditional acceptance of EVERYONE, regardless of ability. Most importantly I will be listening to Autistic Adults, to learn the best way to assist Beth in her journey. Autism Proud will cover all facets of our life, because although Autism and Al-Anon are big parts, there is much more to us than those two aspects.  I will never pretend to know what is best for someone else, or tell another family what they should or shouldn’t do. I can only share Our family’s beliefs and journey, in the hopes that it touches another person and helps them feel a little less overwhelmed, confused, angry, or lonely. I pray that we all enjoy the coming year and make new friends, while walking on the rainbow path of life.

Life Is Like A Rainbow ~ Bubble Heart

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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

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Support Hair-twirlers Unite to Bring Equality to Nevada

We are extremely blessed to be part of an all-inclusive school district, which treats Beth and all its Special Needs students like every other student in the district. Sadly, we are in the minority. Most parents have to fight to have their children receive the education they deserve, please support this family in their efforts to change the way Autistic children are treated in Nevada.

Hair-twirlers Unite

April is Autism Awareness Month, and today, April 2nd, is Autism Awareness Day. You might be aware already that my 5-year-old, Gage, was diagnosed as autistic at age 2.5. He wasn’t talking, wasn’t gesturing, wasn’t great at eye contact, and would sit in his room and look at books for hours. I googled “toddler not talking” and started to get worried when all kinds of autism links came up. Our pediatrician blew us off when we told him these things. “Wait until he is 3,” he said. “He is a late bloomer.” But I was afraid he was wrong. I called Gage in to early intervention when he was 26 months old to get him evaluated. A 4 month waiting list later, it turned out I wasn’t just a paranoid mom. I was right. It hurt to find out. All that Gordon and I knew about autism was Rainman, and…

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Autism and the Three A’s

One of my favorite concepts/tools in Al-Anon is the Three A’s (Awareness, Acceptance and Action). This excerpt from an Al-Anon Online Forum explains it perfectly:

“In dealing with a change, a problem, or a discovery, awareness is often followed by a period of acceptance before we can take action. This process is sometimes referred to as the “Three As”- Awareness, Acceptance, and Action. Coping with a new awareness can be extremely awkward, and most of us are eager to spare ourselves pain or discomfort. Yet, until we accept the reality with which we have been faced, we probably won’t be capable of taking effective action with confidence.”

I have been a Proud and Thankful member of Al-Anon for 1.5 years now. As I work my program to transform myself into the woman I want to be, I see so many ways to apply our program to Autism and the Special Needs world. In Al-Anon we learn to Love, Value, and Care for ourselves. Despite whatever we have faced in life, and how low our self-esteem may be, we learn that we Matter. Many of us who have been touched by the disease of Alcoholism, have extremely low self-esteem, and truly feel that we are broken and worthless.

I would not wish these horrible feelings of self-hate and self-doubt on anyone. For this reason, some of the verbiage and attitudes which surround the Special Needs Community fill me with immense sorrow. Often when we feel passionately about something we tend to Speak/Type before we Think. We do not stop to consider the ramifications of our words for our children, or others who have Autism. There are many Autistic children who hear, and even more Autistic teens and adults who read, on a DAILY basis that they need to be fixed, cured, recovered and even prevented in future generations. Can you fathom what that does to a person’s self-esteem? Can you even imagine how that must feel, and how that message affects Autistic people everywhere?

It is time for a new, more loving light to be shed on Autism. The verbiage and attitude with which we discuss our Autistic loved ones, is how the world will view them and their peers; therefore, we must be ever vigilant to make sure we are Honest, while also being Respectful. Please let us stand together as a community, embrace all facets of Autism, and create a brighter future filled with Respect and Appreciation for ALL individuals. Our way to do that is by applying the Three A’s to Autism.

Autism & The 3 A's

The background image is property of Lindsey Schultz, who graciously granted permission for use to Jest_Tu_Positive.

Autism Awareness – The first step is to make people aware of the Truths of Autism, and dispel many of the detrimental myths.
I am surprised by how many people we meet that have either no, or completely inaccurate  knowledge of Autism, and how it can affect a person’s neurological system. Some people ask questions and others simply walk away. There are so many teachable moments in a day, which we miss because many people don’t want to talk about Autism, and they treat it as something to be hidden away. Autism is certainly not easy, and for some it is much more difficult than others, but if we are open and honest about it, then society will see that it is an intricate part of our loved ones, and it should be spoken of freely with Pride. Next time you are out in public or you post online simply be honest, and share something about an Autistic person, from a place of Love and Respect. Put Autism in the spotlight EVERYDAY, not just on April 2nd or for the month of April, embrace it as a typical part of our life and be the change we want to see in the world.

Autism Acceptance – The second step is to promote Respect for ALL individuals, by showing the world how to embrace diversity and value Autistic people for their unique abilities.
We cannot tell others what to think about Autism, how to feel about Autism, or how to care for their Autistic loved ones. We cannot force society to interact with Autistic people in a Loving and Respectful manner. Autism is a vast Spectrum, which confuses many people since no two Autistic people are the same; therefore we must share Our Journeys and Experiences with others, so that people can truly understand that Different is NOT Less. Personally, we attempt to always conduct ourselves in a manner which we can be Proud of, and not judge those who possess a different outlook on life. When we do something that does not coincide with our values, we take responsibility and make amends. We strive to instill a sense of Faith, Love, Respect, Courage, and Compassion in our children. We Respect Our children and are realistic about their abilities. We love them unconditionally, and support them in every aspect of life; however, we also challenge them to step outside their comfort zone and explore the infinite possibilities in life. We do the best we can for Our family, and treat everyone we meet with the consideration we would appreciate; we attempt to be the change we want to see in the world.

Autism Action – The third step is to advocate for ALL people, especially those in the Autistic community, to be treated with Thoughtful Consideration at ALL times.
How people choose to take action will differ. We all have our own way of assisting our Autistic loved ones in reaching their God-given potential, while educating others on the best way to interact with them. There is no right or wrong way to take action, simply do what is best for your family, and the rest will follow. We should remember that the road to success is paved with Progress NOT Perfection. Personally, we are very involved in our Autistic daughter’s education and therapies, because communication between everyone in her life is essential to maintaining a healthy balance in her development. We also make sure that she has more than ample time to just be a kid, the sillier the better. We mainly concentrate on teaching both our children the basics of life, with our own Au-Some style. We work on all the areas other parents do, we simply approach those lessons differently some times. When we are presented with a teachable moment with someone who crosses our path, we take the opportunity to share parts of Our Journey. We attempt to emphasize the positives, of which there are many, when discussing Our Autistic Journey with people. We admit that our path can be difficult, and is often quite different than other roads traveled; however, we also experience numerous joys that others tend to miss along the way. Autism, like life, it is filled with the Good, the Bad and Everything in between; it can be an exhausting journey, but it is also extremely rewarding, which is why we always try to view Our Journey through Positive eyes and Thankful hearts. One Day at a Time, we attempt to be the change we want to see in the world.

 

Happy World Autism Day

 

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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Autism Our Way – 2012 Autism Awareness Month

This was my very first, very long post here on the Autism Proud page, prior to starting the blog, I had shared this with family and friends on April 1st to kick off Autism Awareness Month. I am re-sharing today as we attempt to move from Autism Awareness to Autism Acceptance. My post for this year will be published tomorrow for Autism ACCEPTANCE Day.

Jest_Tu_Positive

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April is Autism Awareness Month. In honor of Autism Awareness and our extraordinary Autistic girl, I have decided to share some of my thoughts on the subject, by starting this blog.

Welcome to Our journey through the life of Autism, please come walk with us through the unknown door, down the untrodden path and through a world of possibilities. This blog will serve as my way of embracing our differences and attempting to show the bright side of Special Needs. I feel that beliefs/thoughts/treatments on Autism are as broad as the Spectrum itself. I typically choose not to discuss my Autistic views in cyber-space, because it is so hard to determine the tone of the cyber-word, and because I respect other’s opinions and choices on how to handle Autism Spectrum Disorder.

How we choose to handle Autism in our house, which is right for us, does not mean it is right for…

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Y is for YEARN

Y is for YEARN

Y is for YEARN

Yearn is defined as: “1. to have an earnest or strong desire; long: to yearn for a quiet vacation…” – Dictionary.com

In my opinion, Yearning is double-edged sword.  It can be the force that drives you to achieve things that you may have thought impossible. It can also be the force that drives you rob yourself and loved ones of the simple joys of life. Many parents dream of their children having “normal” and “easy” lives. While there is nothing wrong with this dream per say, we must always remember these terms are relative, based on one’s outlook in life. We must remain vigilant that Our dreams for Our children are based on Our family values and abilities; not on what we perceive others to have.

There are days when I mourn the “easy” and “care-free” life I desperately wanted my children to have. There were facets of my childhood, which caused me to lose that innocent, child-like view of the world at much too early an age. When I had children, I prayed their road would be different, and they would stay kids as long as possible. I wanted to shield them from the ugliness of the world; but as my father has helped me see, I cannot put them in bubbles, they need to see the world for all it is, good and bad, in order to have a firm footing on their path.

Having a child with Autism and/or other Special Needs is not “easy” and it certainly is not “care-free.” Our journey is not considered “normal” by society’s standards, but for us it is filled with many blessings as we find Our version of  “normal.”  Unfortunately, belonging to the wonderful Special Needs community also opens us up to an abundance of ignorance and ugly. I Yearn for a time when ALL individuals are treated with Love and Respect, and celebrated for their diverse abilities. I dream of a time when my girls will be eager to show the world all their Unique and Extraordinary qualities. I pray for a time when they can recognize their areas of struggle, but proudly say Progress NOT Perfection, and keep chasing whatever they feel passionately about, in a way that works for them. In the words of Helen Keller: “I seldom think about my limitations, and they never make me sad. Perhaps there is just a touch of yearning at times; but it is vague, like a breeze among flowers.”

We all have various limitations. We all have diverse abilities. We all have different dreams, and thoughts on how to achieve those dreams. Perhaps Our dream is to live a simple life filled with Love and Laugher. Perhaps Our dream is to blaze a path into the unknown and teach the world something new. Whatever Our dream is, whatever Our children’s dreams are, we must accept that Yearning can be a great motivator, when viewed realistically through our soul. We must never stop pursuing our dreams, because they will take us magnificent places. “Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.” — Harriet Tubman

Yearn “Our way” is defined as: “A calling in Our Heart, and a passion in Our Soul, which fuels Our desire to fulfill our dreams, by building on our strengths and creating new ways to overcome our limitations.”

 

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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

A Day Out With Grammy

The girls and I planned a day out with Grammy today. Our plan was to play at a local Children’s Museum, then have lunch. However, nothing ever goes as planned.

The Children’s Museum was a total bust. There were two huge field-trips there, and the place was packed. Between the noise level and all the people Beth could not handle it. We stayed about 30 minutes, if that, and had to leave. She was so overwhelmed she could not focus on anything and was just running laps around the second floor.

We went to Plan B and drove out to one of her favorite McDonald’s Play-lands, where we spent two wonderful hours playing, munching, laughing, and being silly with Grammy. Although Anne could not get past the first tube, she was perfectly happy staying on that level, playing guard to the “castle” and making numerous trips up/down the stairs. After 2 hours Beth was running herself ragged, and we had to leave before she overheated or got sick. She had a massive meltdown, and obsessed about “playing” until bedtime.  Thankfully our new adventure to find chocolate (Reese’s Peanut Butter Cups), did have her smiling a bit in between her sad moments. Plus, she fell asleep for a bit in the car, which I had hoped would help her feel better; but when she woke up and found Grammy gone, that was whole other issue, and many tears were shed because she missed Grandma.

The five hours we spent at home until bedtime were rough, to say the least. Beth laid on the couch bundled up in a blanket sad and crying on/off for quite some time. When she was up and moving around, Anne could not be anywhere near her, or she melted down. Poor Anne doesn’t understand how they can be playing one minute and the next Beth wants nothing to do with her. We had some moments of happy, like when Daddy surprised us by coming home early, but even that could not pull our girl completely out of her funk.  Unfortunately, she went to bed a sad, exhausted little girl. I can only pray that she gets some quality rest tonight, and wakes up a bit more regulated tomorrow.

Most people do not see the fallout of an exciting day for us. Most people think that because Beth had fun that everything was great. Most people do not know the full extent of what the fun-time does to her. I felt bad for my mother-in-law today, because she was heartbroken to see the extent of the post-activity meltdowns. It killed her to hear Beth crying, sobbing, gasping, and choking because it was time to leave. Every time Beth sobbed: “I want to play” I saw the pain on momma’s face.  Overall it was a wonderful day, but it was followed by our usual aftermath, which for us is exhausting, but normal. For Grammy it seemed to be a sad, rough ending to a great afternoon.

Today got me thinking… How much do we shelter family and friends from seeing and/or knowing the true extent of our children’s suffering? Do we perhaps lessen the the  magnitude of sensory overload to protect our loved one’s from enduring the heartbreak we feel when we cannot comfort our children? Although I am always honest about Beth’s limitations in social situations, I think I hold back from telling people how bad it really can be; because I do not want them to focus on the negatives of Autism, I want them to see all the positives and wonder Beth can give the world.

Honestly, I envy the families who can go anywhere, at anytime and not have to worry about the effects of the day. This is not a luxury we have, we must evaluate every situation and decide if the activity is worth the potential ramifications for Beth.  One day we will figure out how to best handle the fun activities, and minimize the meltdowns that follow. Hopefully one day Beth will be able to tell us herself, what she is capable of handling without being overloaded to the point of meltdown. I am not sure when, or if, that day will come, but until then we keep trying and praying, while comforting our girl the best we can.

As is typical in our journey, today was a roller-coaster ride filled with highs and lows, but overall both girls came away with some marvelous memories of a Fun Day Out with Grammy. We are very blessed to have love and laughter in our life, and cannot let a little rain keep us from dancing under the rainbow.

rollercoaster

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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

The Difficult Eye Doctor Visit

Today the girls hung out with my folks while I spent the morning doing much needed errands, and visiting the laundry-mat to wash all the blankets and miscellaneous bedding in the house. When I got there to pick up Beth, to take her to her eye doctor appointment, she was quite emotional and quick to meltdown. My stomach twisted in a knot, because I knew if she was like this at one of her favorite places in the world, then there was not much hope for meltdown-free doctor visit. Sometimes I really hate when I am right.

She was happy enough on the car ride and we played “Find the Doctor’s office” on the way. When we arrived she was still pretty even-keel. As soon as we got in the actual office she remembered the playroom, and wanted to dart. Unfortunately, it is Spring Break and the office was packed, especially the playroom. So we checked in and I kept her at bay for as long as I could, but she needed to get in there and play, so I waited by the door while she jumped in the empty car. She held up really well the first 30minutes, but then she was getting bored and antsy. Finally after 50minutes, they called us back.

The first part was not bad; they wanted her to identify the same 4 letters over-and-over in different sizes on the wall. They gave her a board with the same 4 letters and asked her to match them. I told the technician she would have better luck asking what letter was on the screen, because Beth doesn’t completely get the matching theory yet. So she tried that and Beth did well with it, but did have some issues when the letters were smaller. Now, was that because she couldn’t see them, or because she cannot consistently identify letters and numbers yet? I don’t know, but I suspect it was a little bit of both. Anyhow once we finished with that part, they needed to put drops in her eyes to dilate them. **Insert First Meltdown of Epic Proportions.**  Eventually we did get the drops in, but she almost vomited in the process and was so overwrought, it took quite some time to calm her. Also after this point she refused to sit on my lap for anything.

Back to the waiting room we went to give the drops time to work. By this time it is 4:10pm, which is when we should be eating dinner. So now, not only is she tired, highly sensitive, and sad, but she is also hungry. While in the playroom she decided she wanted to play with a group of kids. At first they were shunning her and trying to ignore her. Once the one little girl left, the sister and brother who remained, were actually engaging with Beth. She was really drawn to the sister, who was about 8 or 9, and the girl had tons of questions about Beth and Autism. The entire time we talked Beth was touching her arm, or holding her hand. She was calm and content, until the girl was called back to see the doctor. **Insert Second Massive Meltdown.** I tried everything, but could not calm her down. She was sobbing so hard she was drooling, gasping for air, and blood red. As my heart was breaking for her, and my mind was racing for a solution, I looked up to see several people gawking at us. Yes, they were gawking with mouths open and all, right before they started whispering to each other and staring some more, some with smirks. Normally, I can ignore the ignorance of other people, but today it really cut me deep. How any adult can sit there smirking and gawking at a child in obvious pain is beyond me. I was on the verge of tears myself, when the receptionist came over with a basket of stickers and tried her best to help us. I appreciated her understanding and support more than I could convey in that moment. Eventually Beth calmed down and then it was time to go see the doctor.

Once we were in the exam room, the technician did a few more tests. I told her that at this point Beth was really struggling to hold it together and may not be that cooperative. She assured me Beth was doing great, and kept telling her what a big girl she was, and praising her efforts. Even when Beth would not listen to her, the woman had the patience of a saint. Once the doctor came in, she was pretty content again, and he was able to do most of the exam without incident. She does have astigmatisms in both eyes, and will need glasses eventually. Doctor T does not feel they are a necessity at the moment, since she is hovering around 20/40, and thriving in school. He said that the small benefit they may provide her at this time, is not worth the trauma and sensory battles she may experience. So we will go back in 6months and see how she is doing. He expects that by the time she starts Kindergarten in the Fall of 2014, she will need glasses. All we can do is pray that by then she will understand why she needs them, actually keep them on, and not react negatively to them.

We stopped at the reception desk one more time to get our form for the school’s file, and make our follow-up appointment. By now the waiting room was pretty empty, and Beth happily flitted from one thing to the next. She even went up to a woman sitting with a baby, and said: “Oh how cute.” Then I told her it was time to pick up Anne and head home. **Insert Third Meltdown, of Slightly Less Proportions.** All of sudden she didn’t want to leave and she cried most of the way to McDonalds about missing the doctor and needing french fries. Of course this was at 5pm, when she was starving and far past the point of regulation, all I could do was try to distract her until we could get some food into her. She was happier once she started eating her treat, but the rest of the night was a horrible roller-coaster filled with many tears. Now she is sleeping peacefully in her bed, but something tells me we will have some night terrors tonight, so I will be sleeping with one eye open.

I am mentally and physically exhausted. Trying to restrain her and give the necessary input to calm her down, took a real toll on my already injured shoulder. At the moment, all I can say is: “My Everything Hurts.” The physical pain I will get over, but the emotions of today will linger with me much longer. I am appalled at how some of the people in the waiting room behaved and conducted themselves for two reasons. One is because they are adults and should never be amused by seeing a child in pain. Two is because they are teaching another generation (their children) to be unkind and judgmental when you see someone who behaves differently. I am HEARTBROKEN at what I witnessed today, but I am also so VERY thankful that Beth does not realize the ignorance of most people yet.

I am extremely PROUD of Beth, and how hard she tried today. In all honesty this year was much better than last year, which means we are making progress. Our life is about Progress NOT Perfection, and that makes today a victory for our girl, even if it was a truly ROUGH day for her. She did the best she could, and as always, I am inspired by my Hero, Beth.

As we quickly approach Autism Awareness Month, I will be joining many other bloggers to invest my time and energy in Autism ACCEPTANCE Month. We must find a way to stop another generation of discrimination, we must find a way to teach society that Different is NOT Less, we must send a message “RESPECT and COMPASSION for ALL People.”

autism acceptance month

For more Information on Autism Acceptance Day and Month, please visit:

https://www.facebook.com/pages/Autism-Acceptance-Day/301079916622195?sk=info&app_data

Or

https://www.facebook.com/events/314081628698619/

 
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Autism Proud – Journey With Us – by Jest Tu Positive by Dorothy Stronglove is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

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