Sounds odd, right? Well, when it happened to me it felt even more wired. 

At 14, being non-verbal and autistic must really mess you up more than ever. That’s where my son is right now. The teen years and his hormones have been difficult for him to handle and that has resulted in behaviors that I am not able to manage without professional intervention. Consequently, I decided to get him into intensive behavior therapy, hoping we would be able to sort things out for him and understand how to help him with all that he is going through. These therapies would last for 1.5 hours and to put it lightly, it was not something I would take him back to. I could tell he did not want to be there either but I wanted to trust the process so we went along anyway. 

Since the therapy fell during school hours, I would pick up my son from school and take him to the clinic. It was like any of those days that I was picking him up from school. The school’s parking is right next to a mildly busy street. As I walked my son to the car, he suddenly took off towards the street. I tried to get hold of him but he slipped out of my grip and I fell and skidded on the hard concrete, bruising myself badly. Lying there in the parking lot, for what seemed like an eternity, I watched my son run into oncoming traffic, still giggling. It felt like my life was moving in slow motion, every moment lasting a lifetime and weighing heavy as if waiting for an impending disaster. I gathered myself again and ran after him, shouting his name and pleading for him to stop, hoping all the cars would see him in time or hear my yelling and know to hit the brakes. 

Thankfully a pedestrian noticed this and stopped the traffic while I scrambled to catch my son who was still running, finding all the commotion even more exciting! He was 14 and strong while I, a middle-aged mom. So, I finally got hold of him only when he decided to stop, probably after his excitement had weaned off and he no more found the chase fun. 

Holding him tight, real tight, this time, I walked back to the car, my heart still thumping in my chest. As I reached my car, I saw my son’s teacher and his aide rush to us. Someone from the school had seen what unfolded in the last few minutes and probably had informed them. I was trembling when they approached to check on me. They asked if I was ok and it was only then that I realized that I was bleeding from several placed and bruised all over. The adrenaline rush and the possibility of how badly this could have ended had numbed my sense of pain. While I suddenly became aware of my pain,my son stood next to me still a little wound up and slightly giggly, completely oblivious of the repercussions of his behavior- a stark reminder of how autism can overwhelm his senses and disconnect him from the rest of the world at the same time. 

Once I was calm enough to drive him, we went back home. On my way back, under the echoes of my son’s muffled giggles, and the slow trickle of my tears, I wondered if he tried to escape because he did not want to go to the therapy and had no other way of getting out of it other than try to run away. I felt helpless for him and his inability to communicate and have control of his own life. His giggles now made sense- they were nervous laughter. Yes, that’s what it was. I was sure about that now. I canceled his therapy and took him home. 

As we settled in, I realized that my bruises needed attention, so my husband drove me to a pharmacy. While he and our son waited in the car, I went in to get some help. That’s when my husband decided to have a conversation with my son, explaining to him what happened and how his actions got me injured. A few seconds after he was finished, he noticed our son silently crying and quietly wiping his tears. When I came back from the pharmacy, I could tell from the expression on my husband’s face that something big has happened between when I left the car and now. As he recounted what led to our son wiping his huge tears, my heart swelled with joy!! 

In the 14 yrs of his life, except when he was a baby, I have NEVER seen him cry with tears !!!! These were not tears of “I didn’t get what I wanted and I am going to throw a tantrum “. He evinced remorse for what he did. These were tears of regret,  of feeling sorry, and of owning accountability for the consequences. These were tears of empathy!!! He was dealing with complex emotions, and I couldn’t have been more proud of him for processing these feelings so appropriately!!! I know these feelings must not have been easy for him to navigate. After all, it was his first time!! It was a rare glimpse into his heart and how he could feel and I could not be happier that we got to see this side of him. 

Who said autism takes it all away!!! Autism can try as hard as it wants, but some battles we will win. My son could empathize and cry!!!! What a great feeling it was!

Autism-0, my son-1 !!! 

The post When my son’s tears brought me joy appeared first on Little thoughtlets from the world of Autism.

One of my son’s most significant challenges has been his behavior and just as I write this, I am scheduling his next set of intensive behavior therapies. We have been dealing with some behaviors that have been challenging and impacted our lives in many ways. I feel lonely and defeated and sometimes just plain sad. It’s a feeling that is hard to describe.  Fortunately, for me, I have a few people I know I can reach out to for support. My son’s teacher was definitely not on that list and not because she is not kind, but because we just don’t have that kind of a relationship.

On this particular day, I was already overwhelmed with all the behaviors we were dealing with and the fact that none of the interventions were helping my son was not making the situation any better. I knew he was trying to tell us something through his behaviors but we were clueless about what it is. As I sat mulling over what to do next, I got a call from my son’s school. With my heart already heavy with my stress, anxiety, and helplessness all piled up, I picked up the call and heard a familiar voice on the other side – his teacher’s. She had called to inform me of a new behavior that she had noticed that day and wanted to talk to me over the phone personally and explain it with some context. She was probably not prepared for what came next. Neither was I. I sobbed. I sobbed hard and inconsolably. There was silence on the other end for a while, followed by some kind words that were a blur and then we hung up. I have no idea what came over me but after the deluge of emotions settled down, I felt embarrassed. I must have looked so weak, but I am supposed to be the strong one  – always, fighting for my son, looking for answers, and hoping against all hope, right? But honestly, it also felt good, to let it all out. As I struggled with my muddled feelings, I received an email from his teacher.  There it was, I thought,  a written account of how bad my son’s day had been at school. I was almost ready to put it away for another time when I noticed the subject line “10 Big wins this year!” With my vision still blurry from my tears, but my heart already warming up from the subject of the email, I clicked to read what turned out to be one of the most inspiring emails I have received so far.

This is what it read :

I am so sorry I had to call and share about the challenging behaviors today.  V is truly an amazing kid who I love and cherish.  Unfortunately, there are other people in the world who do not see all the amazing things your son can do the same way we do and it breaks my heart.  I know you love your son and it is obvious to anyone who talks to you how dedicated you are to helping him be successful!  Since today is a hard day, I wanted to remind you of some of the big wins we have had this year:

1. Spitting at people is gone!  (THIS IS HUGE AND SHOULD BE CELEBRATED!!!)

2. V has started to verbalize when he sees glasses instead of immediately grabbing them! (WOO! GO V !!!)

3. V has learned how to independently take down and stack chairs.  At the beginning of the year, it was totally hand over hand and now he relies only on occasional verbal prompting to attend to the task! (AMAZING KID HERE!)

4. There were 7 times today when V used his feelings card and calming strategies card to safely express what he needed!  Identifying emotions is so challenging for some autistic individuals and I am so proud of Vedant for making progress in this area! (7!!! THAT IS SO MANY!!!)

5. V is eating lunch without throwing food and is showing improvement with behavior around glasses and will soon be starting to spend small parts of lunch in the cafeteria with his peers! (Lunch is so exciting but here he is, handling that excitement super appropriately!)

6. V has not eloped this year!  I know this was a big challenge for him last year so what a change in maturity for him. (LOOK AT THIS KID BEING SAFE!)

7. V has been showing what a strong reader he is.  We have backed off reading answer choices to him and have him read them independently and he is answering academic questions more accurately than ever! (WITH ALL THE STIMULUS HE HAS TO SORT THROUGH HE HAS ALSO FIGURED OUT HOW TO READ?! AMAZING!)

8.  V has stopped using the bathroom to escape work.  He is putting in the effort to consistently get everything done in class. (HE IS WORKING SO HARD!)

9. V is showing huge gains in math by learning all new math vocabulary and increasing his ability to count backward to subtract. (COMPLETELY REVERSING HOW YOU COUNT IS NOT EASY!  THIS IS SO EXCITING!)

10.  He has been increasing consistency with using “All done” across settings (speech, lunch, classroom). (LOOK AT THAT GROWTH IN SELF-CONTROL! AMAZING!)

Please know all the capital letters are because I am so excited about how much he has achieved in just the first quarter of the school year!  We still have three more quarters to go and I know he will just keep growing and maturing.  I am so proud of him and know you are too.  We love V here at school and I will miss him this weekend and am excited to see him Monday!

By the time I reached the end of this email, I could not breathe, I was so overwhelmed. I needed this so much that day. This email was like a visit to the Optometrist and getting the right lenses. I could suddenly see clearly again and how! This letter from his teacher spoke not just about my son’s successes, it brimmed with the love that his teacher had for him. It was a letter full of love, unadulterated pride, kindness, and acceptance. It was the letter that reminded me that when you are in the trenches, there will always be a guardian angel who will pick you up and put you back where you need to be. Today, that angel was the letter that my son’s teacher penned for him with so much passion.

As I read this email to my son, I knew he must have felt loved and for someone in his place who probably feels lonely, friendless, and almost always left out, this was the reaffirmation that he is special and cherished. This letter must have made him feel appreciated and seen and that is a huge feeling.

Life is not smooth. It’s not supposed to be. My life has a lot more bumps than I had imagined and every once in a while I need a hand to get me over those roadblocks that might sometimes feel like the end of the road. This letter did just that. This one is for those cloudy days when my son and I need an extra bit of sunshine.

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Being the parent of a child with special needs can be an incredibly rewarding experience, but it also comes with its own unique set of challenges. It’s important to recognize these challenges and take steps to establish a self-care plan that will help you meet them head-on. Here are some tips to get you started.

Common Challenges Parents Face

Parents of children with special needs often face the challenge of navigating their child’s medical and educational needs while balancing the demands of work and family life. This can lead to feelings of exhaustion, guilt, stress, and even depression. Emotional stress is often a significant issue, as parents may experience anxiety, depression, or grief over their child’s diagnosis. Physical exhaustion can also be a problem, as caring for a child with special needs may require significant physical effort. Isolation is another common challenge faced by these parents, as they may find it difficult to maintain social connections outside of their immediate family due to added responsibilities.

Finally, financial strain is often an issue due to the high cost of medical expenses and specialized equipment required for special needs care. It’s important to recognize these feelings and take steps to address them in order to maintain your own mental health and well-being.

Identify Triggers of Fatigue

Identifying what triggers your fatigue can help you manage it more effectively. Consider factors such as lack of sleep, physical activity, social support, or financial stressors that may contribute to your fatigue levels. Once identified, you can take steps to address each trigger to reduce your overall fatigue levels.

Consider Joining a Support Group

Joining a support group for parents of children with special needs can provide invaluable emotional support during challenging times. You can connect with other parents who are facing similar struggles and share advice and experiences that will help make parenting easier. Support groups are also great for social connections, which can help reduce feelings of isolation and loneliness.

Utilize Self-Care Strategies

Self-care strategies such as meditation, yoga, journaling, or simply taking time out for yourself each day can help reduce stress levels and improve overall mental health and well-being. Make sure to take regular breaks throughout the day to recharge, and find ways to relax and unwind. You can also schedule time for activities that you enjoy such as reading, playing a sport, or listening to music.

Improve Your Nutrition

Adopting healthier eating habits is essential for maintaining good physical health when parenting a child with special needs. Eating nutrient-dense foods such as fruits and vegetables will give you the energy you need throughout the day while also providing important vitamins and minerals that will keep your body functioning at its best. Additionally, try incorporating healthy snacks like nuts or seeds into your diet which will provide long-lasting energy between meals without causing blood sugar spikes like processed snacks do.

Seek Professional Assistance When Needed

Parenting a child with special needs can be emotionally draining at times so don’t hesitate to seek professional assistance when needed from doctors or therapists who specialize in this area. They will be able to provide valuable advice on how best to cope with any issues that may arise during this journey as well as provide resources that may be beneficial for both you and your child.

Changing Jobs For More Flexible Hours

It’s important not only for yourself but also for your family that you have realistic personal goals like changing jobs if necessary. A job with flexible hours allows parents to attend medical appointments and therapies, take care of their child’s needs, and manage their own well-being without sacrificing their career goals.  By prioritizing self-care through changing jobs for more flexible hours, parents can better manage the challenges of raising a child with special needs.

Parenting a child with special needs requires dedication, patience, love – but most importantly – self-care. Take some time now before making any big decisions regarding parenting by researching different areas, utilizing self-care strategies, and setting realistic personal goals like changing jobs. These best practices should put anyone interested in taking their first steps towards independent adulting at ease while also helping ensure optimal mental health, and well-being along the way.

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So, it does not come as a surprise that my son who is autistic and severely speech delayed is often invisible to most. I am equally guilty because I have often discussed him with people as if he does not exist in the room. I make decisions for him and I am not talking big life decisions, but everyday decisions like what he wants to wear, eat or do, whether he should lie down or move around, or if he should be pacing or sitting in one place. He is often ignored for what he is and treated like his feelings and opinions don’t matter- he doesn’t matter. All because he has still not found a way to communicate and express himself. 

Since I cannot really have a conversation with my son, and between the two of us, it’s me who does most of the talking, most of our dialogues are generally instructional and not conversational. While it’s not so on purpose, as a parent I fall into this trap of talking less and parenting more. After years of trying to communicate without words, we have fallen into a routine of mostly understanding each other’s cues and talking only when these non-verbal cues fail. I’m not saying that I don’t talk to my son but it’s definitely not like I would have if he could actually have a conversation with me. I’m still learning to have a two-way conversation with fewer words. I often forget to give my son the same attention and acknowledgment that I would have if he could talk. 

I partly get why people avoid him. In most cases, they don’t know how he would respond if they approached him and often they are unsure what to talk to him so they simply pass by him and pretend they did not see him at all. So, it’s always a pleasant surprise when someone acknowledges his presence. More than my son’s, my face lights up when someone actually speaks to him. I know, it sounds extremely unusual that I get so excited about people talking to my son, but trust me, it is such a rarity that I tend to make a big deal out of it !! 

Every once in a while, when at a store’s checkout, a kind cashier says hello to him, and when my son would not respond, I make it a point to clarify that he cannot talk, as if, it was important for them to know that my son is not rude, just non-verbal. Clarifying that my son is non-verbal is also my way of ensuring that those handfuls of people who do see him are not discouraged by his unresponsiveness. While I hope that someday my son will be treated no different from his peers, I feel like, over time, my own limited interaction with him makes this dream a mere velleity. I may not have been leading by example.

However, the universe has a wonderful way of reminding us of the obvious. It was a foggy winter morning. I was walking my son to his bus stop. Most days, as we walk to the bus, the street is pretty quiet except for the 1-2 odd students walking past, immersed in their own thoughts, headphones, or phones, too busy to notice anyone around. Even as we wait at the bus stop, while other students catch up with each other, no one really notices my son or cares to even acknowledge him with a nod, possibly because his “quiddity” throws them off. My son and I are used to this special superpower he possesses – of being mostly invisible to everyone else, so it doesn’t bother us much anymore that we are left on our own.

However, on this day, as my son hopped along the street on our 30-second walk to the bus stop, giggling and flapping, enjoying the peace and quiet of the morning, an elderly gentleman, walking past him greeted him. As always, my son walked on. I, as always, apologized for his failure to respond. What next happened was a lesson I will never forget. In a voice that oozed warmth, the gentleman said “ Well, he can hear, can he?” I mumbled a yes, unsure where this conversation was going. He continued “ Then it’s good for him to have someone greet him ”. He then smiled and moved on, his figure blurring in the fog. 

The sound of the bus screeching to a halt pulled me out of the moment that almost seemed like it was purposefully choreographed for my epiphany. Wrapped in the warmth of the exchange I just had, I walked my son to the bus, still ruminating over a single line of conversation that seemed to have suddenly reshaped my way of thinking. 

As I waved him goodbye, I silently promised my son that he will come back to a mom who would not just talk for him but also talk to him, a mom who knows he can hear her and see her even if he cannot talk to her and a mom who gives him that respect he deserves.

The post Why I will talk to my son more appeared first on Little thoughtlets from the world of Autism.

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Going to a hairdresser has to be among the top 3 challenges that most parents with autistic kids talk about. There have been several articles by professionals about strategies to deal with this. Parents have shared horror stories about this experience and formed peer support groups over this . There have been posts on social media when a hairdresser goes out of their way to help get a child with autism through a haircut. In fact, a whole new category of hairdressers has evolved who are more sensory-friendly in their approach.

So, it’s not a surprise that we too have had our share of struggles when it came to getting a haircut for our son. 2 days before his hair cut, we would start talking to him about it, show videos, and do pretend hair cuts to prep him for the D-day. On the day of the haircut, I would carry a couple of his fidgets to distract him and a change of clothes because he would invariably throw up out of anxiety, right in the parking lot. Going in we would act unnaturally cheerful like we were going to Disney World, just so he can feel less nervous about it. If there was a wait, we would go back in the car while one of us would wait until it was his turn and then call him. The waiting always built up his anxiety. Right before the haircut, I would give a brief overview of his challenges to the hairdresser and request her to be patient. I would also check with her if this was something she was ok doing for my son. Once all of this was in place, my husband and I would stand next to our son whose discomfort started with the cape because he was too sensitive around his neck and could not tolerate it. Once that was in place, I would kneel down and hold my son while his dad helped the hairdresser with making sure our son did not try running away or making any sudden movements that might injure him. Then we would all sing his favorite rhymes until we were finally somehow able to get through the most basic haircut within the least possible time.

Next month it would repeat all over again. It was no less than a nightmare for us. It was not just our son, it seemed like we too started dreading his haircuts.

Often we would consider skipping the whole haircut hassle and letting his hair grow but then he needed help with his personal hygiene as well and this was only going to add to his troubles. So we gambled on consistency and routine to help us through this challenge and hoped that one day it would all become easier. 

As years went by, we went down from prepping 2 days ahead to talking about it on the day of the haircut and just taking one fidget and an iPad. He was handling the cape a little better, tucking his fingers between the cape and his neck to prevent contact. However,  he still continued to be extremely anxious, and try to grab the clippers or hold the hairdresser’s hands during the haircut. The rhymes still continued and I was still hugging him and holding his hands, covered as much in his hair clipping as he was, sometimes more! But I have to admit that after 13 years things had started to look up.

This year, right before his school was to reopen, in our preparation for back-to-school, we went in for another one of his hair cut. Once in the store, I performed my usual drill of informing the hairdresser and bracing her up for my son’s anxiety and defensiveness. This time, however, in a rush, I forgot his fidgets and iPad, so we were in there without the usual support. As he sat on the chair, I notice him getting a little queasy but he immediately relaxed and allowed the hairdresser to put the cape on. I decided to stand right next to him but not hold or hug him. As the clippers came out, I was ready to block him from grabbing the clippers or the hairdresser’s arms but to my surprise, he sat quietly, letting the clippers smoothly glide over his hair. This was the boy who strongly resists getting his hair combed or brushed because of his sensory defensiveness but here he was calmly getting his hair clipped. It was like I was watching his anxieties shredding away!!!! As I stood there, watching him smile, sometimes at me and mostly at his reflection in the mirror, I wondered how far we have come and how proud this simple moment of a haircut makes me. There was my 13 yr old boy, sitting calmly, getting a haircut like all of his peers. Today made the long journey to this moment worth every bit. The extraordinariness of this situation was the fact that it was so ordinary!!! It was an absolutely uneventful visit to a neighborhood hairdresser and I could not have been more proud.

As I have often said, our journey with autism is replete with challenges and worries but it is moments like these, apparently simple, ordinary, and mundane but one, that for us, sparkle with joy and magic that makes this journey worthwhile. 

Autism may win the race, but this lap was ours!!! 

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When people see us, our son, they see a snapshot of our life. It’s like the story of the elephant and the blind men, where everyone only sees a part of him and makes a conclusion about our and his challenges. So, it’s not unusual for me to hear well-meaning but not so comforting – “think about those who are going through worse” or “ you worry too much, he comes with God’s plan”, or “it’s just this one thing, he will get over it as he grows”. While all these comments are meant to make me feel better, they make it even more frustrating for me to step out because I feel like I am being silently judged and I do not even get the chance to present my case well enough.

For years, I have always wanted for someone to just listen with an open heart, not sympathize, not give solutions, not try to comfort. Just. listen. For years, I have wanted someone to simply say that they are there if I need them and say that loud and clear and then leave it at that. I might never trust my son with anyone else except me but the fact that there is someone out there reaching their hand out to hold my back is very reassuring. 

And finally, it happened. We were attending a party with a few friends. My son, with his onset of teen years, has been way more challenging than he used to be. His behaviors have escalated and that has made it almost impossible for us to leave his side or for someone else to interact with him. This is on top of the already existing challenges he has, especially when among people or outside the house. So it was pretty apparent that we were struggling to get through the few hours that we were there. 

After what seemed like an eternity of walking on eggshells at the party, when we came back home, I noticed a message on my phone. It was from a very dear friend. This is what it said, “I saw how much you go through with <my son’s> challenges. Kudos to both of you (my hubby and I). Always remember we are here and if there is anything we can do to help you, please let us know”.  3 simple sentences but strangely they had the power to make me feel validated, that I was not overreacting to my situation. Suddenly, I felt seen, understood, and supported, without the “but”. “If’s or, “I think” or “you should” added at the tail end. There was something about the heartfelt simplicity of the message, I could feel tears welling up in my eyes. For so long I had been waiting for someone to say just this – no advice, no sympathy. Just this. It felt good.

But as I sunk myself in the warmth of this message, a felt something bothering me. I read the message again I immediately knew what it was. As a caregiver, I want to be understood but as a mom, to hear that my son is challenging breaks my heart. I want people to talk about all the amazing things that my son is or can be. When I return from a party, I want my phone flooded with messages about how much joy it is to be with my son and how his uniqueness is special. I want to kvell in his extraordinaire, not gloat under the shadow of his challenges. It did not feel as good as I thought it would.

I know my son has challenges – some seen, some unseen, some that we are facing and some we know we will eventually. The challenges will never stop and some might even be unsurmountable but every time I hear that from someone else, somehow it makes this whole thing more real. 

There is no denying that because of our son’s diagnosis., we often go through a lot of our life experiences in unexpected ways. However, most of our days we live in unintentional oblivion of the looming presence of autism in our lives unless we are thrown into a situation where the stark reality is hard to overlook. That’s when I feel exposed and vulnerable, making me want to go back to the safety of our home, away from the sympathetic and sometimes uncomfortable glares of those around us. Maybe it’s the vulnerability of that situation that makes me crave the unadulterated understanding of others. But maybe that is not what I need. The long-awaited message from my friend was a wake-up call for me to realize that what I need is for me to be at peace with myself and not put the onus of my absolution on anyone else. I do not need others to understand my situation. All of these are for me to own and process. My friend’s beautiful message opened my eyes to my own predicament and made me see things a little more clearly. 

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My son is autistic. He cannot communicate and express himself so I tend to think for him, speak for him and assume things for him. Sometimes I am right where he wants me to be, and probably most of the other times I am way off but he has no way of telling me that so I arrogantly keep going as if I am his savior. In my mad rush to constantly be his advocate and voice, I sometimes forget to stop and watch him be himself, with no demands from me or the people around him. In all this craziness, I also forget that he can have his own dreams too. I found him giggling in his dreams, so I know he dreams and that he dreams of happy things. But while I claim to be the know-all for my son, I couldn’t even guess what exactly was it that made him giggle in his dreams. However, here I was claiming to know and work towards making his dreams come true!!!! It made me wonder what else he might be dreaming of and if my dreams and his align at all.

Over the years I have always wanted him to have neurotypical friends, to be called to playdates and birthday parties, or just have friends visiting him. I never stopped to think if that is what he wanted as well. Like so many people, he might not really want the company of others. He might enjoy being with himself. Maybe he likes to sit and watch and observe people but not really interact with them. He might dream of enjoying the silence of his own company and his thoughts, with no other distraction. However, in my ignorance, I might be constantly pushing him to say hi to everyone he comes across, shove him towards other kids so that he can mingle, or just keep asking him to socialize more. Maybe I am doing the exact opposite of what he prefers, imposing my expectations on him.

I keep pestering my son to bike, run or play with a ball. I have enrolled him in different special needs sports and keep pushing him to be more active. He prefers a more sedentary lifestyle. Maybe that’s what he prefers or maybe that’s what his body allows him to do. I have seen him enjoy watching nature- the clouds floating by, the raindrops falling, the trees and the grass swaying in the wind. Maybe he dreams of sitting in a lush green field by a lake, just enjoying the breeze on his face and watching the squirrels search for nuts. He probably dreams of reaching high up into the clouds on his swing and dipping his feet in their fluffiness. Maybe he dreams of these and not of being an athlete. I might be getting it all wrong, trying to make him imitate what his peers are doing.

I push for him to be included. Inclusion is the buzzword in the special needs world. I want him to sit with his neurotypical peers, study with them, perform with them, and play, and eat with them. I want him to be a part of everything they do. I never ask the question if that is what he wants too. Does being with people who don’t understand him or how he feels really make him happy? Does he want to be in a room filled with people who are too noisy for him and do not appreciate his sensory needs? Maybe my push for inclusion is not his desire. Maybe he likes being with those like him. His dream might be to be in a world that has people who are like him. Like everyone else, he might want to be with like-minded people and not with those who operate very differently from him. Maybe inclusion is my dream and not his.

I wonder if in his dreams he talks to us and shares his thoughts, and has a conversation about things that excite him, or is he still non-verbal in his dreams, struggling to make himself understood and seen? Does he even dream about being able to talk or do words seem insignificant in a world that he visits in his dreams? I wish I could know if it’s just me obsessing over his need to communicate or does he want this as much as I do.

To fit in this world, I have tried hard to change so many things in my son- make eye contact, don’t flap your hands, don’t make that sound, don’t laugh for no reason; stay in one place; don’t fidget so much; don’t listen to nursery rhymes anymore, you’re too old for that; there’s no reason to be anxious when no one else is; sit down with everyone…the list goes on!!! I’m always correcting him, trying to change him, and asking him to fit in. I never paused to think maybe he wants none of these. Maybe he wants to flap, jump, laugh, and watch Old McDonald on a loop. Maybe he wants to be different. Maybe his dream is to be himself and to be happy about it. Maybe he dreams that one day we all will be ok with him being him. He might want us to stop dreaming for him and dream with him instead. Maybe he was giggling in his dreams because he was in a world that was just this – a world of his dreams, not mine.

The post Do our dreams align? appeared first on Little thoughtlets from the world of Autism.

While most of us have been judged and told we are not good enough, at one point or another in our life, special needs parents, especially moms, happen to get that a lot. As long as they are not complaining, they are supermoms, but the moment they reveal their cracks or complain about all the challenges, they are sad fishing !!! 

In my more than a decade of being a special needs mom, I have come across some amazing mothers who have gone above and beyond, left almost no stone unturned, and literally given up their own lives to ensure a better life for their children. Some succeed, some don’t. Not everyone who tries succeeds and not everyone who fails did not try hard enough. There are many factors at play and for an onlooker, oversimplifying it as just a measurement of effort or bad parenting is one of the biggest mistakes they can make. While they may make a comment and move on with their lives, it could possibly be the last straw that broke the horse’s back. For a mom who is struggling, trying to figure out how best to support her child, or going through a rough patch and probably reaching out for support, all it might need is one nod or a frown to change how they feel.

I wish it was just running across town for therapies but there is so much more to raising a child with autism. Autism is a spectrum and if I had a penny for how many times I have reminded this to people ( and even more surprisingly, to people within the autism community), I would be the richest person in the world. While some individuals may need little to almost no support, others might need constant supervision and support for every aspect of their life right from when they get up in the morning. While some may have amazing abilities, others might have severe cognitive and motor challenges, some might be excellent communicators while others might be suffering from language processing disorder and have no way to express their feelings. Some have extreme behavior challenges and some may be reserved and withdrawn. We are all raising an autistic individual with a different set of challenges and we are all doing our best within our capacity.

When they are not with their child, you won’t generally see an autism mom at a party, a theatre, or on vacation, you will find them at a doctor, therapist, support group, seminar, school meetings, or in front of their computer, looking for more resources. They are not doing this for an audience or an applaud, though an applaud would do no harm. They do this because they love their child and want their child to thrive.

Among all the conversations about autism and its challenges, what gets forgotten is the impact it can have on the family as a whole and the caregiver in particular. It’s sometimes hard to fathom that those who give support might need one too. The strong facade of a mom trying every single day to put every service in place and fighting every conceivable system out there to get her child all they rightfully deserve can sometimes give in to the need to be understood and seen. For the untrained eye, that may come across as attention-seeking when it actually could be a cry for help.

If you cannot say anything nice, do not belittle them for their effort or doubt their intention because you do not have the right to unless you are raising their child with them and walking in their shoes ( but refrain from judging even then). And for all you special needs moms out there, weed off the negativity from all the chatter that surrounds you and just keep the good. No one, absolutely no one knows your circumstances the way you do and how it affects you emotionally and physically. So don’t let anyone get into your head and tell you that you are not doing enough. Don’t let a random stranger tell you that your reaching out for support is an attempt to get sympathy. Just keep doing what you do best – make the world a little better for your child.

The post You are doing your best! appeared first on Little thoughtlets from the world of Autism.

Today I felt heard, understood, and validated. I found myself nodding at all the stories that were being shared, laughing at the quirkiness that I otherwise find challenging, and sharing the pain and anxiety that seemed so real and relatable and not paranoia.

The self-doubt I had over why so many popular autism interventions don’t work for my son; whether I was doing something wrong, suddenly seemed like a less important question. While everyone around me in the autism community was demanding acceptance and understanding for individuals with autism, here I was reveling in the fact that I could accept myself better. I felt like I was listening to my story from someone else. While they say all autism is different, still, these stories seemed less different, more familiar, and closer to home. 

Suddenly, I felt less guilty about wanting my son’s autism to go away because I was among those who, while would go to the end of the world to help their child, would still choose a life without autism for them. 

I love my son. He makes it very easy to do so. I don’t always have the same feelings about his condition. He is more than his autism. His identity is not just because of his diagnosis, though it can seem like they are one and the same. While I would sorely miss the uniqueness his autism imparts him, I would give an arm and a leg to take autism out of his life, for our lives to no more be inosculated with autism.

When I say this, I know there will be a lot of eyebrows raised because it is assumed that in saying so, I imply that I resent my son. However, those who come to this convenient conclusion forget that not all autism is made the same. I want my son to talk. I want him to go to a regular classroom, and have friends. I want him to independently bathe, brush and take care of his daily hygiene. I don’t want to worry constantly about him dashing off into oncoming traffic, jump into a body of water, or just wander off without being able to process the dangers of it. I want him to be able to navigate the world without me holding his hand even when he is 60 or until I die. I want him to know that if the house is on fire, he needs to run to the nearest exit, and be able to actually read the exit sign. I want him safe, I want him to be able to live on his own and I want him to have someone to love him even when I am gone. I want to worry about the normal things in life. 

While for most people, me saying this would break their myth of my supermom image, my friends in this support group could easily relate to this. It was so easy to take off my supermom cape and talk to people who would fold it down for me, keep it aside and hand it back over when I was done talking. It was cathartic !! 

As the meeting ended, I wondered why are there so few such groups and immediately knew the answer- because they are dealing with severe challenges every day and do not always have the luxury to chit chat or even reach out. A mom I met had never had a time off for several years because her 25 something daughter is severely affected and there is not a moment that she can be away from her. Another mom is still taking care of her 40+ son, alone. Still, they were not here to complain. They were here to find a dentist, a therapist, a sitter, a legal aid (yes, we need paperwork to legally have our child’s guardianship once they turn adult) or a resource that could make the lives of their child safer and easier. They were not here for themselves. 

Tucked in this small corner of the virtual world are these caregivers who are largely left unrepresented, for they are too spent and the little energy they have is preserved for caregiving, which disproportionately gets difficult as they age out and their child grows up. And for those who can speak out and tell the world about autism, the rosy picture of a successful but autistic athlete, singer, artist, author, or motivational speaker gets more eyeballs and ears. For them, Autism is to be embraced, not cured. It’s offensive to use that “C(ure)” word. But for those parents trying endlessly to potty train their 20 something, find a seizure medication that will manage the daily and unpredictable convulsions, helplessly watching their non-verbal child trying to communicate or having to call the cops on their child to help with the violent meltdowns, a cure is what they need. While they accept their child with all their heart and soul, embracing their autism can sometimes be very challenging. Today I was among those parents. I was one of them and I couldn’t have been more comfortable because I found my tribe!

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