Faith, Love and Respect for ALL

Archive for March, 2013

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.

Desperately Seeking Sleep

I think sleep deprivation is part of the Parent Job Description. Although, no one ever told me I would covet other people’s sleep; which I do, and I am downright jealous of the people who talk about how well their kids sleep.

When Beth was 2.5yrs old, we saw a wonderful sleep specialist. We did a sleep study that was horrible and traumatic for Beth, but it was necessary, so we endured as best we could. The good news was that her test came back with all the results in normal ranges. Dr S stated that our sleep issues were a sensory thing, and perhaps Beth’s body could not slow down enough to allow her to sleep. We decided to try melatonin, and it was a God-send for our girl, and us. We started at .25mg and slowly worked up to a dose that worked for Beth, after a few months we settled on 1.25mg and that worked for about a year.

Then in December 2012, after almost a year of a mystery cough that came and went throughout the night, Beth had her tonsils and adenoids removed. We thought her sleep would improve drastically following the surgery. Surprisingly, even with the mystery cough gone,  her sleep was worse. After several attempts to fix the problem on our own, I resigned myself to another sleep study, and called the sleep specialist. We saw Dr. S on Monday, and she was also against another sleep study. **Insert Happy Dance Here**  The reason she did not recommend another sleep study, is because there was nothing in what I was telling her that would make her think we would see a different result.  Then we had the “Welcome to the Real-World” sleep talk…

She said all children in this age range typically wake up once an hour, for most it is brief and not even noticeable, but for children on the spectrum it can present with the moaning, chanting, etc… She also stated that 30% of the time children spend sleeping they are in Stage 3, which is where you will see the most activity, such as tossing/turning, sitting up, sleep walking, etc… Plus, she said 25% of the time they are in the deep REM sleep which is where the dreams occur and you may hear talking, whimpering, laughing, etc…; this is when night terrors can occur as well. She stated in her experience, children who are Sensory Seekers, and on the go constantly in their waking hours, tend to be quite active in their sleep as well. All I could do was nod and try to absorb this new information, which explained ALL our sleep issues.

So what we are experiencing is normal; however, it is more pronounced due to Beth’s sensory issues.  Dr. S suggested we try keeping Beth up until 8pm, so that she in bed less time. She said if you reduce the amount of time children are in bed, you can train the brain to get more quality deep sleep. She also recommended we keep the after dinner activities less stimulating, since it can be difficult for children to calm their system down, it is best to keep the late afternoon/early evening activities more low-key. Another suggestion was to not take her out of her room for any reason during the night. She thinks some of the night-time awakenings could be behavioral, and this should nip them in the bud.

We instituted the new sleep routine Monday with 1.5mg of melatonin, and actually made it until 8pm, under protest from the girls. The rest of the night was ROUGH.  Beth had several night terrors, which I had expected due to the later bedtime, because they always happen when she is overtired. Tuesday was a bit better, and Beth definitely was quieter, and I only had to go in twice to soothe her after nightmares. Last night I only made one trip in to cuddle away the cries, and she quieted down very quickly. I am hoping once we adjust to this new schedule it will help us all get the rest we need. Doctor said we will never have perfect sleep every night, and I know that. However, if we could get four or five nights a week of  real sleep, it would be a wonderful blessing. I am an exhausted momma, desperately seeking sleep, but I think perhaps there is a light at the end of the tunnel.

 

sleep

 

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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.

Two Years Old Today

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Anne, Happy Birthday to you.

God’s Blessings to you, God’s Blessings to you, God’s Blessings dear Anne, God’s Blessings to you.

Today is Anne’s 2nd birthday. I truly cannot believe that it has been two years since we were blessed with another miracle. I was in labor for 18hours with her, but the only thing I can remember is her beautiful face and the amazing feeling of finally holding her. We brought her home, and it has been an adventure ever since. Although physically she resembles my husband’s side of the family, spiritually she mostly favors my side. She has very expressive facial features, since the day she was born she could give you one of the “Grandma Dorothy Looks” and stop you in your tracks. She is also very adept at the “Grandma Dorothy Hand.” I have always grieved that my Great-Grandmother was called home to Heaven before I had children, but every day I see her in Anne, and I know she is here with us.  It is simply amazing that Gram passed away almost 6 years before Anne was born, but Anne has so many of her mannerisms and a ton of her attitude.

At two years old, Anne already seems wise beyond her years; perhaps it is from all the Angels whispering in her ear. She is so intelligent, and crafty, that most days I can safely say I was outsmarted by a toddler. Even before her speech started to blossom, she could always communicate her wants and needs very well. Now that she is actually talking more, she tells you exactly what she wants (i.e. sleep, food, drink, bath, play, etc…) and when she wants it, which is usually Now.  Our girl knows how to get what she needs and wants, and honestly leaves very little for us to guess at. She has also become quite the little helper and wants to “Helpie” with everything we do. Maybe the more she helps us with the cats, they may actually start to trust her and let her pet them, which would put her on Cloud Nine, because she LOVES animals, especially her “Kitty-Kitties.”

Although Anne can be quite independent, she is also a total cuddle bug. She gives the BEST hugs and you melt every time she races into your arms and squeezes tight. She also has gotten very good at entertaining herself, and most times is perfectly content to sit and play alone.  It is almost as if she already understands that sister needs extra attention at times, and she is showing us it is okay. As a mom I want to do everything equal for my girls, and in the past, most days left me feeling as though I had to “neglect” one to meet the needs of the other. As the girls get older, I still feel these pangs of guilt and uncertainty, but it is much less frequent. We do the best we can, and some days are easy and others are a struggle; being an only-child, I am learning right along with the girls about how to create a happy home for siblings. The times when they can actually tolerate and play with each other are the most wonderful days, because we can just all be together playing, laughing and loving life.

Anne is our baby, but she has taught us so much. She is a strong-willed girl, who is going to do extraordinary things in life. We are blessed that she chose us for her parents, and we are privileged to walk alongside her on her journey. We have our dreams for her, but I think our TWO year old little lady is going to blaze her own trail, knowing all along that Mommy and Daddy are right behind her beaming with Pride and Love. Thank You Anne for all that you are and all that you do, you are a blessing and source of great joy to everyone who knows you. We love you baby, Happy Birthday!

 

birthday princess

 

 

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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.

 

Our Week

As my father always says: “Do you want the good news or the bad news?” I always take the bad news first, so I think that is how I will deliver Our experiences this week.

The bad…

My best-friend, who just happens to be married to my uncle, had to put her furry child to sleep today.  Lulu has been a part of our family for 10+years and I simply cannot fathom going to their house and not seeing her. As adults we know she is no longer suffering, and has gone onto a better place where she will be sickly no more. This brings us solace and will help us with the grieving process; however, Beth does not understand these things. She is a child who will miss her and ask for her, she is a child that will break Marie’s heart every time she asks where Lulu is. How do I tell her Lulu is gone, and make her understand? I wish I knew the answer to that question, perhaps Beth will surprise us all, and understand everything in her own way. Perhaps she will be the key to healing for all of us.

rip lulu

I have been having horrible pain in my right arm for a few weeks. I thought it was a pinched nerve or perhaps a pulled muscle. However once I accepted that nothing was working to make it better for any length of time I went to the doctor. It turns out I have arthritis in my shoulder.  So now I keep doing what I am doing (taking ibuprofen, doing stretches, icing it, massaging castor oil into it, and praying for relief). I have been dealing with arthritis in my knees for 20years, so I will find a way to deal with this too. We are getting healthy for our children and I will not let this stand in my way of being the fun-active mom I know I can be.
The good…

Today Beth brought me some books, crawled in my lap and actually sat and read with me.  She wanted me to read first, then paraphrased what I said or told me what she saw in the pictures. It was 20 minutes of pure bliss, especially since she let Anne sit with us during story-time.  Anne giggled, babbled and pointed to pictures and touched Beth as much as she could. It was one of the rare moments when they could tolerate each other, and their sisterly love shone through. It was a moment that my heart truly needed today, as always my girls heal my heart in a way that only they can. As if that was not enough pride and joy for mom, we had a tea party in the bath this evening, and it was wonderful. I can honestly say that it was the most peaceful and enjoyable bath the girls have had in quite some time.

After 6 weeks of committing to being Healthier Parents for our kids, Henry and I are making great progress. I have lost 17lbs and I am feeling better everyday. Henry has lost 20lbs and dropped his AC1 from 8.5% to 7.1%. Anything under 6.5% is considered non-diabetic, so we are definitely on the right track. We are making small, but effective changes,  and we can see tangible results. I am getting my stress/mood eating under control, and have been able to make better choices when I feel the need to eat my blues away. The best part for me was when I had a cola yesterday (in an attempt to boot a migraine), and it tasted horrible. Now if I can just get rid of my chocolate cravings, at least now I choose dark chocolate and have 1 or 2 squares and I am done. We are taking Baby Steps after all.

So there you have it, our week in review. There are always rainbows mixed in with the storm clouds, and we must always look for them, because they fill us with light and love. Have Blessed week friends, and be thankful for the clouds and rainbows that color your world.

rainbow2

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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.

X is for XENOPHOBIA

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.”

 

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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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