Boo’s Bubble Brigade is Stepping Up For Autism

The last two years we have participated in the Chicago Autism Speaks Walk. In 2011 we walked with our former playgroup to support the organizer’s son. At that time we were unaware that Beth was Autistic; it would be another 2 months before we would even call Early Intervention for an evaluation. We were amazed by the 15,000+ people in attendance, and it was a wonderful feeling to part of something so monumental. We did the entire route, but were one of the last families to finish because our daughter required many breaks, and by the end of the walk she was so overwhelmed and out of sorts that we headed home; passing up the opportunity to join our friends at the cool party that was at the end of the walk.

In 2012, with a fresh diagnosis of Autistic Disorder for Beth, we supported the Walk Now For Autism Speaks campaign. We planned to walk with the playgroup again, this time supporting Beth and the other woman’s son. We did the fundraising, and even had team shirts made, but were unable attend the event due to inclement weather.

In 2013, to continue our efforts in promoting Autism Awareness, Acceptance and Action we have decided to participate in a walk supporting a local organization that assists Autistic individuals of ALL ages and ALL abilities reach their God-given potential. Here is an excerpt from the Little Friends About Us page, which describes this extraordinary organization:

“Little Friends has been serving children and adults with autism and other developmental disabilities for over 40 years. Based in Naperville, Little Friends operates 11 dynamic programs that include three schools, vocational training programs, community-based residential services and the Little Friends Center for Autism”

This year, we will participate in Little Friends fifth annual Step Up for Autism walk on Sunday, June 23, 2013; which offers a fun-filled morning for families along the Riverwalk in downtown Naperville.

Having attended many seminars and trainings conducted by the staff of Little Friends, I am excited and proud to support fundraising efforts for this phenomenal organization. Even if I had not already been acquainted with many of their remarkable staff, the mission statement for Little Friends would have been enough to inspire us to support them. Here is their magnificent mission statement:

“It is the mission of Little Friends to empower children and adults with special challenges to live, learn, work and participate in the community. We believe everyone should have the opportunity for a rich, full life in their own community with meaningful work, their choice in living arrangements, an education, strong relationships, fun and laughter. Just like you and me.”

On June 23^rd Boo’s Bubble Brigade, our team of family and friends, will spend an Au-Some morning helping to ensure the future availability of Little Friends outstanding services for Autistic individuals, their families and their community. We will Step Up, bubbles in hand, and help build a brighter future for everyone.

If you are in the Chicagoland area, please consider joining us, or creating your own team to Step Up For Autism. If you are not in the Chicagoland area, but would like to donate to this extraordinary organization, you can donate to Boo’s Bubble Brigade or make a General Donation to Little Friends. If you are inclined to pray, please keep this amazing organization and everyone they touch in your prayers. We pray they meet their fundraising goal of $175,000 in order to continue assisting Autistic individuals reach their God-given potential through nurturing programs, which promote Pride and Respect for ALL.

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 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.

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 ♥

 

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

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…

View original post 2,245 more words

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.”

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/

 

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.

X is for XENOPHOBIA

X is for XENOPHOBIA

Xenophobia is defined as: “an unreasonable fear or hatred of foreigners or strangers or of that which is foreign or strange.” – Dictionary.com.  Another definition listed on Wikipedia is: “…unreasonable fear or hatred of the unfamiliar.”

Society as a whole does not accept change well, it does not welcome diversity with open arms; instead, it revels in uniformity. The basic fact of the matter is that the unknown scares people, because they do not know what to expect. Unfortunately, it seems as though everything has become about conformity and control, which can be quite distressing to anyone who does not fit into the preconceived notion of “normal.”

Our world and everything in it, especially its people, is constantly evolving. Who is to say that Autism is not the next stage of evolution? The mind of an Autistic individual is extraordinary, their senses often heightened, they can see and visualize things that we could never fathom. They function on different levels than most typical individuals, which many times is a simultaneous blessing and curse. They have differing abilities, but this is nothing to fear or discriminate against. Now is the time to educate people, and advocate for Autism Acceptance and equal treatment for ALL.

The first step toward Autism Acceptance starts with us, because the way we talk about our Autistic loved ones, is how society will view them. We must be careful not to overemphasize the positives or the negatives of Autism; we should simply be honest about what life is really like in a Special Needs family.

The truth is… It is not easy, and some days are so hard all we can do is cry, and pray for tomorrow to be better. Some days are wonderful and fill us with pride and joy. Our Autistic loved ones suffer in ways that we may never fully understand. Every day they make progress in their own way. They are asked to constantly battle their own systems to appear more “normal.” They see the true beauty in the world through innocence and love. The way most of our loved ones are treated is beyond horrible, and it needs to change! We need to accept all Autistic people as they are, love them for who they are, embrace their diversity and teach them to navigate this world as best they can. We must teach them to be proud of themselves, especially their struggles and triumphs, so they can stand strong against the fear and ignorance in the world.

We need to show everyone that Autism is not to be feared, because sometimes the most amazing blessings come in unique packages, which we cannot understand or control. If we seize opportunities to educate people, on what Autism means to us and our loved ones, we can change the perception society has of Autistic individuals. We can start to move from discrimination to acceptance. In the words of Aldous Huxley: “There are things known and there are things unknown, and in between are the doors of perception.” Let’s start closing those negative doors, and opening positive doors, by being Autism Proud.

Xenophobia “Our way” is defined as: “An unfounded fear of the unknown, based on a lack of knowledge and understanding, which can have devastating effects for everyone.”

 

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.