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Attending Parents' Night at the School of My Son on the Autism Spectrum

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I’m not sure how other parents feel about parents’ night. I’m not quite sure how I feel about it myself. I feel like I should prepare in advance and have some relevant and meaningful questions to ask about my son J and his schooling. However, I don’t prepare or think up things to ask, partly because the school keeps us informed of some of what he’s doing in his weekly summary and with termly updates.

I do, however, feel a bit anxious before I head in about how it will all go. Is he doing well? Does he try hard? Does he listen or do what he’s told? I know he recognizes his numbers to 20/30 and well beyond (probably up near 100). He doesn’t quite have 1-2-1 correspondence nailed for counting or know “the oneness of one,” but he’s trying hard and he’s getting there. He knows all of his colors and shapes. He can recognize and name every letter of the alphabet, in and out of sequence. He can sing with tune and rhythm, as well as finishing rhymes and songs by saying or singing the missing words (using approximations of words). I think he is amazing. He overcomes so much and he just gets on with things. He’s a trier and a doer. If he doesn’t get something, he just keeps trying. All of this I know, and I’m not worried about his “academic” progress as such.

My worry is about his social skills. His ability to relate to others, to play with his classmates, to make friends, to follow instructions, to join in and to respond to life in school appropriately. He quite likes his own company or space and doing his own thing. Can he go to assembly? Can he join in with performances? Does he watch whole school events or join in with them? I wonder if he’s coping in the classroom or wider school setting. He seems happy at school and seems like a happy boy generally. I’m grateful for this.

After speaking to his teacher tonight and looking through his books full of photographs and learning aims, which show what he’s achieved over the year, I have to say I’m impressed. His teachers, assistants and the school in general give him so many experiences and opportunities. He interacts with school on his own level, but over the course of his first year there, he has achieved so much. From not being able to join in at all and finding change and noise so hard to cope with, from not being able to sit at a desk or in a group, not playing or sharing with other children and not having many interactions with others, he has come such a long way. He can now join in with assemblies and whole school activities, he can sit for circle time, play alongside other children, join in with some activities in the class, go for outings in the local community and further afield, and he initiates interactions with people around him. He never leaves school without waving and saying “bye” to every member of staff he passes.

I’m one proud and happy mum tonight. Anyone who knows me knows I’m not an overtly emotional person, but I don’t mind saying that I have tears of joy running down my cheeks as I write this. My baby has overcome so much, he’s tried so hard, and although to many it may seem like small steps forward, for us he has made huge leaps. His school and the staff there have played a big part in that. We can’t thank them enough.

Follow this journey on Upside Mum.

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Why I’m Grateful for My Autism Diagnosis

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I am a family practice physician, and I’ve known I’ve wanted to be a doctor since I was 4. I’m fairly intelligent, but I struggled in school and was never in the gifted program. Growing up, people would say to me, “You’re smart, why can’t you just ____.” I felt the same way and had a low self-esteem and was hard on myself. I never felt like I fit in. I always wanted to, but I could never figure out what I was supposed to do.

It was like all the kids around me had been given some secret guide to being popular, and I didn’t have it. I got tired of being shamed for how I was acting. Slowly I learned what I was supposed to do by watching others and trying to copy what they did. I was grateful for people like my mom who would give me gentle corrections when I acted inappropriately. It was a lot of hard work as I constantly had to be thinking about what I was supposed to be doing.

I started to do a lot better in college when I could select classes that were interesting and challenging for me. I still acted differently, but I found friends who didn’t care so much. I graduated with a bachelor’s degree in biomedical engineering and was accepted into medical school in New Jersey. I was specializing in family medicine until 2012 when health issues forced me to step away from practice. I currently work with the Colorado Cross-Disability Coalition (CCDC) as a disability rights advocate and activist.

I attended a lecture at a conference last summer about teaching religious education to kids on the autism spectrum. As the facilitator started going down the list of traits that kids on the spectrum often have, I realized I had personally had issues with most of the areas listed. As I read more about autism, I also found that symptoms can be very different between men and women. Men tend to act out more when they get overloaded, whereas women tend to shut down. Autism is thought to occur more frequently in boys, but I wonder if we’re missing a lot of diagnoses because of generalizations about autism from the behaviors we’ve seen in boys.

After the workshop, I had begun to research autism and realized that it could explain many of the things I had challenges with growing up. After a thorough evaluation by a psychologist, it was determined that I do indeed meet the diagnostic criteria for an autism spectrum disorder. I was relieved. Getting a diagnosis finally allowed me to forgive myself for not being able to figure it out when I was younger. I also could finally acknowledge how much work I had put into learning how to act, and how much work it took to maintain all of the time.

When you’re on the autism spectrum, your nervous system is under constant assault from all of the sensory information in the world around us. Sounds are louder, colors are brighter and tasks you need to accomplish can quickly seem overwhelming. I have always suffered from sensory overload, though I didn’t have a way to explain what was going on. As I have learned, pain, illness and general stress can all make this sensory information even more overwhelming. Modifications to the environment can help as long as you know what sensory overload is and what your triggers are.

Since my diagnosis, I have been able to learn what sets off my overload and how I need to advocate for myself and my needs. I have also been able to learn what I can do to help manage overload. I bring a visor and ear plugs with me wherever I go and have gotten glasses with a special tint that help with my sensitivity to florescent lights. I’m also gentle with myself when I get overloaded and need to stim. I have had to learn to be a strong self-advocate, especially because neurotypical people often can’t understand why such seemingly small things can be overwhelming for me.

I have learned to thrive through the advocacy work I do for myself and others with disabilities. I understand the communication issues many neurodiverse people face as I have a lot of trouble trying to talk when I am overloaded. In speaking with other neurodiverse people and their caretakers, I am able to understand the problem from the standpoint of having a neurodiverse brain and suggest solutions that others might not have thought of. I am very passionate about issues that are important to me, and I redirect my energies towards the work I do. Advocacy work is also ideal for me because I can tailor the hours I work so that they’re better for me. I can also make sure to get the supports I need to do this work.

Autism is not a curse, and I’m glad I have my diagnosis. I have started to learn what I need to do to take care of myself, and I am better able to speak up for my needs. For me, my diagnosis connected many of the parts of my life that previously had not made a lot of sense. If you think that you might have “high-functioning” autism, talk with a psychologist who specializes in diagnosing adults. I’m certainly glad I did.

Follow this journey on Health and Life.

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Mom Petitions Target and Large Retailers to Add Sensory-Friendly Checkout Lanes

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Kristen Jackowski wants to make shopping easier for families with sensory sensitivities. Jackowski’s 5-year-old daughter, NavyAnna, is on the autism spectrum and is often overwhelmed by the candy displayed in checkout lanes. Now Jackowski, through a Change.org petition, is asking big retailers like Target to create sensory-friendly shopping lanes that replace sweets with sensory-friendly toys and other items.

This simple change could potentially help lots of parents whose children have either sensory processing disorders or food allergies. “Once the candy, chocolate, and other snacks are within arm’s reach, the meltdown is inevitable,” Jackowski wrote in her Change.org petition. “We have also encountered judgment from other customers and employees who are ignorant to these issues in that they lack education and sensitivity training. The stares, comments, and eye rolls of disgust I could do without because the situation is already hard enough.”

Jackowski’s petition has been signed by more than 1,000 people and has caught the eye of major retailers, including Target. According to CBS Philly, Jackowski’s petition has made it all the way to Target’s corporate headquarters. It’s also caught the attention of her local Shop Rite in Brookhaven, Pennsylvania.

While Target told Philly Mag that making the changes recommended by Jackowski would take lots of planning and design changes, Paul Kourtis, the store director at the Brookhaven ShopRite, was able to implement a sensory-friendly check-out lane in just days. “I just merchandized the aisle correctly with sensory-friendly objects. No candy whatsoever,” Kourtis told the magazine. “It was easy to do. We’re happy to do it. I have 18 checkouts at the store. If I lose one for a good cause, that’s perfectly OK.” The Brookhaven ShopRite also plans to provide sensory-friendly training to store employees.

Jackowski has met with her local Target, whose staff said they can’t make changes without the approval of Target’s corporate office. She remains optimistic. “Since I am a dog with a bone I will be pushing this further,” she wrote. “I see a very simple solution to an issue plaguing my family and other like us. Just a few simple in store changes can be monumental! Let’s make the world a little better, more inclusive and help people understand!”

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To My Son’s Kindergarten Class, From the Mom of a Boy on the Autism Spectrum

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Hi, guys! Welcome to 4K! You are so adorable in your Spider-Man backpacks and sparkly Elsa dresses! I just know that you are going to have an amazing year exploring your beautiful new school and expanding your brains.

This year marks the first year of 13 that you and many of your classmates will spend together at Williams Bay School. Many of you will make friendships that will last a lifetime while you’re at this school. I should know, my very best friends are people I met in grade school.

Growing up in a small town is an amazing thing. You get to know people. Like, really know them. You will come to know more about the people in your classroom than you know about some of your distant relatives. This is both a blessing and a curse.

You are too little to understand this right now, but you have so much power! Yes, you! You have the power to create a space in your 4K room that is filled with love and respect and acceptance. You have the power to embrace things that you do not understand. The power to see all of the wonderful things that make people unique and special. You have the power to expand not only your brains, but also your hearts. And then you have the power to go home and share your infinite wisdom with your family and your friends. Because even though you are only 4 years old, you have the power to love unconditionally.

This is something that gets harder as you grow up. We need brave kiddos like you to learn about unconditional love and to hold on to it. We need you to teach those in the world who have forgotten what it means to love without condition. To tolerate without reason. To believe without hesitation.

Do you see that little boy over there shaking with excitement? The one who did not answer you when you asked him his name? That is my son, Grayson. Grayson is the most wonderful little boy. He is filled with passion and love and energy. He loves space and throwing rocks and eating suckers. He may not look at you when you talk to him, but he hears you. He may not answer you when you question him, but he is screaming the answer on the inside. He may not join in your group play, but, oh boy, does he want to.

You see, my son, Grayson, is a little different from you and me. Not bad. Not better. Or worse. Not weird or naughty. Not shy or reserved. Just different. Grayson has autism spectrum disorder. I know, lots of big words! Let’s call it ASD. And sometimes, Grayson will act different from you. Sometimes, you may not understand why. And that’s OK! Grayson is just being Grayson! Silly, wonderful, loving Grayson.

Can I ask you a favor? Ask him his name again. This time a little slower. Look at Grayson’s eyes and wait for him to look in yours. Invite him to come and play with you. Understand that sometimes he will say “no.” Remember that he is not mad at you. Know that he still wants to be your friend. He probably just needs a break.

Sometimes Grayson gets wiggly. Do you know what it feels like to get wiggly? Have you ever had to sit still in the car for a very long time? And right at the end you begin to lose patience and you get really excited to get out of the car? Well, that’s how Grayson feels a lot of the time. He is wiggly and just needs a break. And sometimes when he is wiggly, he does things he doesn’t mean to do. He may knock over your toy or push you away. Grayson is so sorry when he does those things. Sometimes his wiggly body just has little bursts that cause him to be wiggly with his hands.

Can I ask another favor? (I know, I’m sure going to owe you for all of these favors!) If Grayson gets wiggly and does something you don’t like, take a big deep breath, softly tell him you are done playing and walk away. When Grayson is done being wiggly, he will come find you to say that he is sorry. I know! It’s really hard to walk about when someone makes you mad. But Grayson is different, and sometimes we can help people who are different by understanding and giving them space.

I never want you to get hurt! So if you don’t feel safe, please tell your teacher in a soft and calm voice. The teacher will make sure you are safe, and she will help Grayson with his wiggles! Sometimes when kids try to help Grayson on their own, it makes him more wiggly.

Being a kiddo is no easy task! Adults ask you to be brave and smart and courageous all of the time. Sometimes, they ask you to do things that they cannot do themselves. You are asked to share your toys and use your manners. You say “please” and “thank you.” And each day you get a little bit older. You become a little more of the grown-up you will one day be. And sometimes, as kids get older, they forget how easy it is to treat people — even people who are different — with love and respect and acceptance.

I know I have asked a lot of you today! And I promise to bring in some really yummy treats to say thank you for all of these favors! But for now I will give you the only gift I can give: my deepest thanks for accepting my son Grayson. It will be very hard for me to send him to school with you each day. I will worry about him every minute I am not with him. I will fret over the things I cannot control. I will overthink the things I can control. I will fear that my message did not reach you. I will pray that it did. I will give you the gift of my thanks. And I will give you the gift of my son.

I know in my heart that, this year, Grayson will teach you — just like he has taught me over the past four years. He will teach you about patience. He will teach you about persistence and endurance. He will teach you about being different. About accepting difference. And despite his difference, he will teach you how to love him. How to be his friend. How to embrace all of the wonderfully different things about him. And about you.

Kids, you have so much power! In all of your 4-year-old glory, you can help me with one more simple task: You can help me change the world! Let’s make this world a safer, better, more tolerant place for kiddos like my Grayson. Let’s do it together!

Grayson’s Mommy

Follow this journey on Pieces of Love. A version of this post appeared on The Huffington Post.

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When My Son With Autism Had to Adjust to a New School After a Move

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Change is hard.

Change is hard good.

Change is good.

This is my incessant mantra this week. These past few weeks have been beautiful and tough. Our family recently moved and unknowingly crossed that magical line dividing two counties, and everything has changed. Change is hard. 

We have a different address. Different utilities. Different commute. No big deal, right? Moving is stressful, in and of itself, but this move was necessary. It’s a huge step up in the world for our family, and I am so thankful that we were able to make that step.

Different school system. That one took hold of us. Even for a typical child, changing schools is dramatic: new teachers, new friends, new routine. My son, however, has autism. The word “change,” in his world, can be like a big grizzly bear, snarling and slobbering and tearing apart the way we function.

His school is a part of what I call his “team” — the professionals, teachers, physicians and other people in our life who make his success possible. His previous teacher is a rock star who loves my son dearly and has become a good friend. His previous aides are caring and wonderful individuals. The progress he has made and the goals he has attained during the past two and a half years has been stunning. And he was supposed to be with this part of his team for one more year.

But that magical line between the counties changed everything. All of a sudden, we took on the dreaded status of “nonresident.” The process to stay in the previous school system was tedious and time consuming, which finally ended in a decision to deny his placement. And although I fought the battle all the way to the state, I was reminded that because my boy and I “do not live in the county any longer, the school division is not under any duty … to your child.”

I was devastated. His teacher and his aides also were. And for a moment, it seemed the world would crash, along with all the progress he was planning to make, again, this year. The prognosis for the new school system was uncertain at best, and I felt very uneasy.

Fast forward with me.

My boy started his first day at his new school on Monday morning. We had gone to meet his teacher and see his classroom on Friday evening, and while we were impressed, we were still anxious about the change. Would he feel comfortable here? Would he, if overwhelmed, begin to act out? To regress even? Would he be as loved and well cared for here as before?

When your child can’t verbally tell you about his challenges or even how his day went, your mind reels with questions in an unknown routine. His first day was a little rocky as was his second. But each afternoon, his teacher greeted me with a smile, a kind word and positive thoughts for the day.

Then it happened. I picked him up yesterday afternoon to find out that he had a “fabulous” day. His transitions were already improving, he worked well and he was becoming comfortable with his surroundings. I am so thankful to know that he is adjusting so well.

Change and transition are a natural part of life in this world, but they are not typically strong areas for my boy. To know that he is handling them with resilience and strength in this new chapter of our lives gives me a more positive outlook for his future, and someday, his independence. For others, these small steps may be minor, even expected. But for us, they are enormous in the joy, relief and hope they hold.

I still miss the team we leave behind, but I’m holding onto this new hope for what the future holds for my sweet boy. I write this in hopes of reaching out to those of you who may need this encouragement. Even if things aren’t going as you planned, there is hope. Our babies are more resilient and strong than we may imagine. And, like us, sometimes they have to step away from the familiar and out of their comfort zone to find that strength.

Change can be good.

Follow this journey on The Starlit Mama.

Lead photo source: Thinkstock Images

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When I Connected With Others Who Were Diagnosed With Autism as Adults

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What’s it like when an adult is diagnosed on the autism spectrum?  

If you’re like me, it was likely a difficult journey reaching this point, one filled with confusion, hurt and a pervasive sense of loneliness. Parents may be gone. Family or friends may have pushed for a diagnosis or have done their best to prevent it. Even when it’s anticipated, being told you’re autistic is a moment of truth unlike few others in life.

No one pushed me toward a diagnosis. I did it on my own. After so many years, I had finally noticed a connection between my behavior, the reaction of others and my being so different. This had always been my circle of hurt and flight: not fitting in, not understanding why and running away.

This time, I saw the pattern. You can Google why an otherwise taciturn person will launch into a pet subject and try to talk the legs off a table. You can take an online autism test every day for a month and never get anywhere near failing, no matter how hard you try. You can finally say, “Yes, this is me … and stop right there.” I could not, even when my wife asked me to.

I was lucky to find a center that specializes in autism research. It took months to arrange an assessment and still more weeks to finally hear the results. My doctor was compassionate and patient. I only wish I could go back now and tell him all the things I didn’t realize were important to the diagnosis, so we both could more easily recognize my autism.

I left the appointment with a folder containing the details of my assessment, a formal written diagnosis confirming that I had a disability, plus a contact sheet listing online resource sites, local mental health professionals and community support groups.

I fell so hard and fast. There was nothing in the folder explaining how miserable and hurt my wife would be when I told her about the diagnosis. There were no warnings that telling others wouldn’t make them believe my news, that I wouldn’t wake up the next day with a permanent hall pass for being different or that my depression and anxiety wouldn’t finally melt away.

There are no adult support groups where I live, no sympathetic friends or 100-day plans for the newly diagnosed who isn’t a child. Maybe it’s not like this for everyone. I was on my own and could no longer tell where the descriptions in the Diagnostic and Statistical Manual of Mental Disorders (DSM) ended and I began. If I still existed at all.

I can only assume that providing a list of mental health professionals is standard operating procedure following a diagnosis. Adults wrestling with their diagnosis may need professional help putting the pieces back together. I have no doubt it’s a necessary and helpful step for many. It wasn’t for me.  

I called one of the psychiatrists on the list, in part because I was anxious and depressed. What I really wanted, however, was someone to explain “me” in words I could understand and help me begin rebuilding my life.

Instead, the psychiatrist couldn’t understand why he had been recommended, talked endlessly and interrupted anything I said, only pausing periodically to have me read a page from the DSM and asking if I thought that was me. I left his office with prescriptions for an antidepressant and an anti-anxiety drug. Perhaps he worked better with children and parents.

It took me three months to get on and finally off the drugs, during which I read everything I could find about autism. Apart from Tony Attwood’s books, the best were those by adults on the spectrum sharing their experience of life. With their help, I found my way to online blogs and websites by and about adults and organizations advocating the right to be heard and supported when needed. I connected with people like me. It was the road back.

This could have been an easier journey, certainly a less painful one. However, that might have required a diagnostic community focused less exclusively on children and the funding it generates, doctors more thoughtful about the challenges facing the newly diagnosed adults walking out their door and family and friends less frightened by the stigma of autism.  

While we wait for this dynamic to change, there are things we can do to make it easier and less painful for others like us to move toward understanding, accepting and liking themselves. We can be seen and heard as we are, not as others expect us to be. We can work to help people not like us understand the breadth of expression that comes with autism and that we aren’t “broken” or all the same. And we can reach out so that people like us feel less alone and more connected, regardless of whether or not they are formally diagnosed.

No one should feel alone on this journey.

Follow this journey on Lost Words.

Lead photo source: Thinkstock Images

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