sensory processing disorder

Therapeutic Day School? Really?

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Jasan has been going to the same public school since the age of three. He is now six. For the past two years he has been in the autistic program within the public school.

In the last IEP meeting we had, the team that works with him felt that some of Jasan’s behaviors were beyond what they were able to deal with. Destructive behavior without any reasonable or predictable antecedent. This is different from the year before and they feel like they are at a loss, therefore, the suggestion was made for him to be transferred to a therapeutic day school where they work with kids that are in a similar situation.

I was not averse to that recommendation. I want whatever is best for my son. I will do whatever it takes without hesitation. So, we (my mom and I) checked out the schools that they recommended and decided on the one that felt like it would be the best for him.

After the first visit, I was not expecting the emotions that arose within me. I was crying the whole way to work after our morning tour of the first school. Why was I feeling sad? Was I scared for him? Is this another feeling of loss to experience of a mom of an autistic child? He can’t make it in public school?

Probably all of the above, but I thought I was stronger than that. I thought, especially knowing the way I reacted to the idea from the team to send him elsewhere, that I was cool with it. NO big deal. It would be better for him.

During the second school tour, I felt good. In comparison to the first tour, this school kicked ass. I liked how the principal presented their mission and how he described the way the try to really understand why kids have the behaviors that they do. Actually getting to the root of the issues. Again, when I left, that strange wave of sadness took me down.

I have vivid memories of separation anxiety with my mom. BIG TIME. Almost debilitating to me. It was a horrible feeling that I wouldn’t wish on anyone, and I can see some of that in Jasan. I see a lot of similarities between him and me. Parts of little Heidi; emotional behaviors in my childhood that give me anxiety just thinking back that far. Gut wrenching feelings. In all honesty, that scares me.

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I don’t think that he fully understands that he will be going to a new school in a month. We visited the new school (which upset him very much because our morning was out of routine) and once we got there, he seemed okay. Timid, but going with the flow.

In my mind, I was sad for him the night before. I was explaining what the morning would look like. The tears and the begging “I just to stay at (his current school)” was making my heart hurt. I don’t think I have ever loved so much to where my heart literally feels like it is being crushed to bits when he is sad. The thought of this transition and his discomfort is pretty paralyzing to me right now. I did not expect these feelings at all.

I get sick to my stomach and angry sometimes when I hear parents that have kids (that transition with no issues) say, “Kids are resilient. He will adjust fine.” I have no doubt that eventually he will be in a new routine and all be will okay. But, the transition may be something that creates distress inside that he may NOT forget. That happened to me. I didn’t forget, and it made a difference in my life in some respects.

I realize I cannot control every aspect of his life. I cannot save him from pain; from sadness. Again, having a child is such a lesson in life. Oh, letting go of control. That is  hard one, especially when it has to do with what he is exposed to out of my sight. He is the love of my life and the closest person to my heart. Autism…ugh. He doesn’t tell me what happens play by play at school or when we aren’t together. He doesn’t share much at all. I am not sure he can yet. That is always something that I have struggled with. It’s really tough.

Today, after the visit to the day school with Jasan was rough for me. I don’t like the idea of him being so far from my office every day. Right now his current school is 7 minutes from me. Sometimes I think I have separation anxiety with him; there are days when I long to see him and can’t wait to be with him again. ❤

This is a lot to take in. For him, once he starts making the change. For me, taking in all of this new information and watching him go through this move. He needs to go to a special school and that is okay. It is not what I envisioned for him, but again I have to change the expectations in my mind.

Why is it so hard to just not have expectations? It is impossible.

I want him to be successful. I want him to be able to hold a job and be independent. Ii hope he is a scientist or a sound engineer…whatever his dream ends up to be. I want him to thrive in this life. I hope he finds the perfect woman who understands him like I do and that they are able to have a love that is beyond measure within a fulfilling relationship.

These are expectations I have for his adulthood because I love him so much.

If life takes a detour to get him there, then I guess so be it. This is my lesson to go with the flow and let go of my childhood memories of anxiety. At least I know how to spot it and can hopefully help buffer it for him. The feelings of anxiety and sadness are going to come up for me in the days ahead. I will try to keep my thoughts positive, but I need to get my feelings out as well.

I want him to FOREVER know how much my heart LONGS for him, and to know I could inhale him I love him so much. 🙂

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Just talk to me…

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It seems to me that within the past week, Jasan’s language is becoming more conversational.

THIS. IS. BEYOND. EXCITING!!!

I have waited 6 1/2 years for these moments. 6 1/2 years.

It’s really happening!

Tonight, after lights were out, we laid in bed and just talked. I have been trying to come up with some more adventures (new experiences for him) for us to do together, and camping came to mind. (I am SO not a camper, but I’ll try anything for him.) I suggested in the summer we could do something like that if he is interested. We literally had a whole conversation, where he was coming up with ideas and asking me questions, and we have a tentative plan.

  1. Do research on the perfect tent to buy. (Jasan and Mama size of course.)
  2. Buy a book and watch videos on YouTube about camping.
  3. Buy the tent in June.
  4. Learn how to put the tent together.
  5. Practice “camping” under our bedroom glow in the dark ceiling stars. (LOL.)
  6. Give it a go outside on the backyard deck one time.
  7. In July, pick a campground. Go check it out and visualize the experience. Make a list of things we would need/do.
  8. Camp for real. I hope I can make a fire.

(Did I just really write all of that? ❤ Total elation.)

And guess what the last thing he said to me before falling asleep was?

I LOVE YOU MAMA.

Eighth time I have heard that unprompted. That is few and far between in his life so far, but each one of those eight times my heart has been filled so full it makes EVERYTHING; the impossible times when I want to give up, and the billion times I have said those words to him with no response ALL WORTH IT.

little jasan

little jasan

little jasan

I have been in a very down period lately. Most of my friends don’t even know. The reason I say this is because my boy, who is totally growing up, has been the most comfortable place to be. Our energy. That space. That place. The universe completely organized a week or two that he has been pretty much amazing at home and has been the only one to put a smile on my face. And, HE IS TALKING TO ME.

It feels so different. I am used to being ignored all the time unless he wants something from me. As much as I love him inside and out, I still feel lonely. A lot. This past week has been an eye opener for me in regards to thinking about him…an older him. A different kind of mother/son relationship. The possibility of sharing dreams and feelings. Just plain old reciprocation. Damn, that would feel good. There is a new excitement I have about my son and this autism thing.

Pretending is exploding. He has willingly been EXPLAINING to me what he is doing. I think this is making our connection even stronger because I get him. When he tells me something that wouldn’t make any sense to someone else, I know what he means. I know what sounds/songs he is mimicking. I can play along in his pretend world and wow, is this COOL.

I just watched this the other day. A Brilliant Young Mind…OMG. It stayed on my mind for days. Just watching the trailer again now makes me cry.

There is so much to think about as Jasan’s mom and how society will play out in his life. Seeing glimpses of an older kid is exciting. Really exciting.

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School on the other hand, well, that is a different story. His behavioral therapist was over in our home a few weeks ago to help with some things. Better use of language we use at times, things to do at home to make life a bit easier, and the main reason was to make sure what they do at school carries over to what we do at home. His behavior is THAT BAD. Don’t get me wrong; I have seen it at home too, LOTS, but just not as severe as what they are experiencing almost daily. The biggest thing I took away from that meeting was she was so surprised how engaging he was at home. He was like a different kid than what they see at school.

I was completely surprised. He is almost unreachable at times in school. There are two modes for him they say; destructive meltdown or unreachable, unteachable; in his own mind.

What?????

This bothers me. A lot. My gut tells me that some type of alternative school, not necessarily one only for autistic children, but somewhere where there is a different approach to learning. The typical public school, “try to fit me into your box” thing maybe isn’t the best for him. (He is in an autistic class within the public school system.) Maybe he is just to young to tell. The school thing is perplexing to say the least. I hate to think of his days as so difficult, especially being there so many hours. Heart breaking.

(I do need to add, he has an awesome team at school. I fully believe that he is in the best scenario for now in the area where we live.)

But… then there is real life. We all follow schedules. We go to work. We don’t always get to do what we want to do. How does he learn this? Through the “typical” way of doing school? I guess I will figure it out as time goes on.

Winding this post to an end, I just want to say this…

He is talking to me. A lot. I love it. I feel like we have a real thing going here. It is only going to get better. I love him so much I could explode. He told me he loved me tonight. We are the king and queen of adventures and I love that too. He makes me smile so big and my heart hurts when we are apart. he agreed with me that we are best friends while looking me in the eye. He is so beautiful in every way to me. Should I keep going?

I mean, seriously. Look at that face!

little jasan

 

 

Truths & Direction.

I have been thinking a lot lately about the direction of this blog. At the beginning of this writing journey, Jasan was younger and honestly, life was easier. Posts were flowing out of me. I had more time that was non-scheduled; we spent more time together and photographing him was a daily occurrence. For those of you that follow us, it has been obvious that I don’t write as much. Why?

Well, I just don’t have time like I used to. Life has changed. We spend more time at school and work. And here is where the “truths” part comes in…

Behavior has become so difficult that it is hard to see the positive sometimes.

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When I started Following Jasan, the goal was to help change the perspective on parenting kids with special needs. I still believe this whole-heartedly, but here I am, finding it hard to do this myself. How am I supposed to write when I am drowning over here?

In my last post, I mentioned finding my rose-colored glasses again, and throwing those babies back on. I did, but damn, they fall off a lot. That is the truth.

Dude.

I have to write this because I know I am not the only one. The most powerful moments for me lately are when I am able to connect with someone who GETS IT. I realized how much I need this, otherwise I feel EXTREMELY ALONE. So, I need to write about the hard times. I need to do this.

I am going to do my best to write more, photograph when I can (because I still feel that is a huge part of the way I tell my story) and hopefully help another parent here and there when they read and are able to exhale for a moment because they too can feel understood.

I still have the highest hopes for my son. He is extremely brilliant. At school, they tell me so. But, he is unreachable. He can’t focus. The times that he does are few and far between. Destructive actions are becoming a daily occurrence. Sometimes I just don’t know what to do anymore. He is getting bigger and stronger. Something has got to change.

He has so much potential. I KNOW he does. At home, when it is not a completely structured environment, he plays in his way. He is happy. I watch him and I know. He is able to block out the world and stay in his happy place. (Geez, I wish I could do that as easily as he can!)

But what happens when I need to go run an errand and he doesn’t want to? What if we are on a time schedule and I need to get to a doctor’s appointment but he WILL NOT get into the car? What if we go into a store but he won’t walk with me because he can’t stop focusing on the automatic doors? What if I just simply say “NO” to anything?

HELL. BREAKS. LOSE.

This is where I feel I have had patience for so many years, but now that he is older, stronger and has a will fiercer than ever, I have LOST MINE. I hate that feeling. It is a completely powerless and hopeless place. When I am running on fumes (because I don’t get the normal “me” time to recharge) it feels impossible to be the mom I want to be. My rose-colored glasses fall into the abyss. Somehow I am going to have to find the strength from somewhere to stand my ground. I feel at this point if I don’t, I am helping create a monster who will run anyone and everyone over.

I struggle with this. A lot. I know he is different from the norm. I want him to be himself and live freely to be exactly who he is, but society doesn’t. I know he has come here to be a teacher to me and others. He has changed me forever because of his autistic ways and I love him beyond any amount of words could tell you. But, when life and the “way the world works” comes into play, he doesn’t want to go with the flow. Here is the double-edged sword: I don’t want to live my life being a tyrant mother forcing him to do things, but I also don’t want to have to walk on eggshells around my own son when he is on edge so that he won’t hurt me or be destructive. How do we both be happy? How do we both flow and live in this society being who we both individually want to be? Do I have to feel like I constantly lose myself in this process? I have done that so many times because I just sacrifice for my child. I would give my life for him without question. I believe there has to be a way that we can live in harmony and be who we both want to be.

I have lots of beautiful and tender moments with him. I wake up and feel so blessed that he is with me. I love who he is. The behavior that I don’t love IS NOT WHO HE REALLY IS. The behavior issues come from the inability to communicate effectively. The sensory processing issues that deter him from being able to regulate his body. It is the will inside of him to NOT be CHANGED. Growing up, becoming more aware of his surroundings and taking in more information that he can’t always process all at once. All of these things are so huge. Sometimes I wish I could trade places with him so I could know what he is going through…

Through all of this, I am trying so very hard to remember my mantra:

EVERYTHING IS ALWAYS WORKING OUT FOR ME.

I love Jasan with such a fierceness that when times are painful, they feel unbearable. It is a love beyond any comparison. I hang on to this so tightly. I know that positivity always wins. We will get through this somehow. I am determined to thrive and I know he is too.

One of my favorite people, who I know GETS IT, took this photo of Jasan. It has to be one of my all time favorite images. It is a moment in time that completely has captured his HAPPY AMAZINGNESS.

This, my friends, is my JASAN.

Jasan

Photo taken by: Janet Kay

I declare to the world that I LOVE HIM!!!!!! There is NOTHING that I wouldn’t do to help guide his life to be a complete success.

 

 

 

 

 

Dating thoughts, Part 2.

Well, here I am…six months later after diving into Match.com and maybe a little Tinder here and there. It has been five years since I have been in a “with him everyday; part of each other’s reality” kind of relationship, and a lot has happened in life since then. For one thing I have become a COMPLETELY different person. For another, Jasan has grown up quite a bit and he communicates pretty well with me now. School is a full day occurrence; I work as close to full-time as I can since my work life pre-child…

I thought maybe it was time to be open to a romantic relationship.

I found out that it’s hard. Not that I thought it would be super easy. It is crazy how much over-thinking I was doing. What happened to the “fall madly in love blindly” feeling that you have when you are early twenties? Ha. I’m kidding when I say that, but it gets awfully  complicated when you factor age, single parent status and autism into the mix.

During first couple of dates I found myself with this weird feeling of having to explain my situation, which I hadn’t ever had to do before. I almost was embarrassed to do so. Not embarrassed of Jasan; that is not what I mean. Embarrassed that I live with my mom and stepdad because I need someone else in this world, besides me, to know my little guy inside and out. I don’t have any free time like normal adults do. I sleep with my son. He still needs me. (This is always debated; I don’t even want to go there. My mom gut says he needs it. I know him and I will know when it is time to start separating.) I only have one babysitter option for nights out (my mom: Aka, “Grammie”). She isn’t readily available, so that means I can go out one MAYBE two nights a month?

Should I keep going?

Hell, what was I thinking? Any guy that I would be talking to would think I’m not date-able. Any guy who likes to spend a lot of time together anyway. I LOVE spending quality time. That’s my deal. That is what makes me tick when it comes to romance…but I don’t have that option.

Frustration.

As time went on, I was focusing on everything about my life that sucks. I mean what really sucks. The last time I was in that funk was when I had come to know Jasan was autistic. I had to mourn. I compared. I worked with kids at the time. Oh man…I would cry on my way home from work so many times. But then, a light bulb went off.

THAT IS NOT SERVING ME OR MY SON. CHANGE THE PERSPECTIVE.

Back then, I really needed to do that to even survive. Depression would have overcome me and I would have been worthless otherwise. Here I was, left to do this alone (which I thought would be do-able…but throw autism into the mix? Damn. Didn’t have a plan for that.)

So, the positivity angel swooped my soul up and gave me a new pair of glasses to look through. Life changed. I cherished all the beautiful differences my son has that other kids did not and just accepted him for WHO HE IS. Challenges and all. A little while later I started taking photographs of his “oddities” which I loved. I gained some momentum and Hello! to this project. Following Jasan was born and I started budding creatively, which I had not done in many years. I started learning more about myself, which basically is what parenting is all about. (Ha. Not what you expect pre-kid, at least your first one anyway.)

I was okay with not having a partner. I didn’t have time to focus on anything else but Jasan and me and figuring out life with autism. I dabbled in a long distance connection when he was younger, but in the end, we didn’t live in each other’s reality. That is not what I wanted. So, single was to be my status.

It took some getting used to, but after a while I didn’t miss it. I didn’t miss the male affection I was accustomed to receiving. In a weird way, I was thankful for this. I know being single and working on ME was something that I needed to do for a long time. It was something that life (circumstantially) forced me into, but it changed me none-the-less.

Fast forward to now, and here I am…back in the funk. I loathe the funk. It scares me, as someone who has dealt with depression since my childhood years. I realized though, it’s okay to want to do things. I miss out on a lot. DATING, soooooo many girlfriend hang outs, going to the movies, going out for drinks, doing anything adult, picking where I want to go to eat vs. where Jasan will eat, photography shoots with my friends, just taking time to learn stuff! Classes, whatever! Simple things like going to the store by myself. Shopping, being spontaneous, traveling, visiting my brother in Arizona… SO. MANY. THINGS. Even when we did finally get to go to Arizona this past Thanksgiving, I STILL MISSED OUT ON STUFF. Sometimes I just feel a big WTF.

But, here I am again. Time to change the perspective. During a really great discussion with my awesome boss, he suggested I listen to a specific podcast: an amazing story of one individual’s strength…and what stood out to me was: are you a VICTIM or a VICTOR?

I have lived the victim card now for some months. I am so done. I don’t like these glasses…I want my victor ones back.

I found them in an old drawer today. Cleaned em’ up and they are ready to wear.

I love my son more than ever. I am excited about our future. I am excited about the day we had today. We have some cool new things and are getting reorganized and that FEELS GOOD.

I am done focusing on LACK, because my life is full of beauty. It may not be your “typical” beauty, but it’s mine, it’s what surrounds me and I will cherish it.

This is a pretty vulnerable post. I wrote it for all the other parents who are held captive by their kid’s special needs. It’s great if you have a wonderful partner to help, but sometimes partners are no help either. Partner or no partner, it can feel EXTREMELY LONELY.

If you have felt this, it is possible to turn it around. Quit looking at what you hate and look at what you love.

The universe will deliver a very different experience to you. It has happened to me before and I know it will again. Try it.

snuggles

He is my favorite snuggle partner. I am helping him to learn how secure he is, because he can feel the love from his mama. That is life-giving to me. ❤

Light.

If I am having a down kind of day, taking pictures of Jasan gets me into creative mode and helps elevate my mood. These photos are a result of one of those days…

window light

It was cold and sleety on this day. Jasan insisted on sliding this window open regardless of the weather. I let him do it figuring it was his way of experiencing the weather. He told me to make a CLOSED sign that would read, “Will return at 7:20 AM.” So, of course I obliged.

Closed

He has been pretending a lot lately, which is awesome. He uses his memory bank of experiences to pretend. I call it “literal pretending.” He wanted the closed sign because of the snow. He kept opening this window and telling the imaginary people outside to “Go the other way.” ha. Love it.

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And then, he voiced his annoyance with me. “Mama, no pictures.”

Darn. 😉

He is definitely growing up. He better get used to pictures though; that’s never going to stop.

Stop.

He is my light. ❤

 

 

 

 

Our life.

I am really getting used to just doing our own thing wherever we are. Sometimes being self-conscious will still creep up on me, but mostly, I OWN IT. As Jasan gets older, I appreciate who he is becoming even more. I keep reminding myself to step back and look at the big picture. I may not totally understand everything now. But, I picture myself looking back at his life when he is in his twenties and it all making sense. Why does he have an obsession with appliances? What is it about fahrenheit and barometric pressure that makes him smile so much? Why does my son prefer Best Buy over Toys R Us? I don’t know, but I’m his biggest cheerleader.

We hung out at good old Best Buy for quite awhile today.

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Refrigerators were a hit.

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There will always be the beloved washing machine.

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And now, the most recent addition to fun spots to go in Best Buy? The printer aisle. We had a lot of fun with sound effects and powering multiple different models on and off.

On a BUSY Saturday afternoon was I spotted taking pictures of my son LOVING on appliances from many WEIRD angles?

Yep.

Did I care?

Nope.

Did a million Best Buy employees come ask us if we needed help?

Yep.

Did they look at me weird when I said my son likes to hang out by the washing machines and we are just pushing buttons and listening to sounds?

Yep.

Am I cool with all of this?

Yep.

It’s our life.

I LOVE IT.

Changes.

I feel like my “Following Jasan” project has been so neglected. I’ve missed writing and taking photos, but sometimes life happens and you just need to try to stay positive and get by. That’s been our situation lately. First year of full day school + a new job for mama + new routine + early as heck bedtime for Jasan = overwhelm and not enough hours in the day.

I don’t want this to sound like complaining; it’s not meant to. It’s a realization of a lot going on and how I have handled it. Umm…I haven’t handled it as smoothly as I assumed I would.

Due to the nature of how my son is wired, he really needs me. I LOVE that, but on occasion I feel like I need a minute to breathe. We went from spending the majority of every day together to (during the school week) about 3 1/2 hours (awake.) Now that we are a few weeks into this new schedule, I know he just needs MAMA and LOVE during that time period. Errands and life have a hard time fitting into that time slot.

Dilemma.

Transition for him has been difficult…as much as I am a sleep nazi with his schedule now, he still remains tired. His diet is beyond horrible at school so I am sure his energy gets low. (I don’t think chips provide the protein he needs. haha.) He isn’t used to NOT having a choice when it comes to the activity in his schedule. That is rough. Throwing and spitting then ensues, and behavior gets out of control. Reading these handwritten notes from his teacher when he gets home from school that describe the destructive actions that occur break my heart. Jasan and I are so connected that it is hard to hear that most of his days now are rough. So many questions go through my mind. I know he needs to learn how to follow a schedule at school. He will never survive in life if he doesn’t, I just wish it didn’t have to be such a painful process.

These past few weeks of what has felt a bit like mayhem to me, I have learned this. I know my son is beyond sensitive to my energy. He knows when I am not my even keel happy self. He may not be able to ask me, “What’s wrong, Mama?” but he will manifest his sensitivities to my discord in different ways. Sickness, moodiness, behavior issues, etc. And then, of course that adversely effects me. The vicious cycle continues until I get my head out of overwhelm and center myself.

I think our children with autism have a special gift. With the way they interpret their environment around them, how could they not be extra sensitive to what their caregivers are feeling? All kids are, of course, but our autistic children…

I believe it’s on a whole other level.

Which poses this thought. When you are a parent or a caregiver to a child with special needs, it is more important that ever to keep life in balance. That may sound unrealistic. Shit happens that we don’t necessarily control. But do we have the ability to create what we want in our reality and keep drama at a low? Absolutely we do.

I think it’s one of those things that we need to really think through to help our children. For example, we know that going into certain environments will cause sensory overwhelm and upset. We know the tools that they need to be able to cope appropriately, or we don’t go. That’s a simple one.

But what about when it comes to our emotional health as the adult? What can we clean out of our day-to-day to reduce emotional upset within ourselves?

That will greatly benefit our children. When we give them a calm and emotionally stable environment, that clears the way for them to thrive. We are their examples. With the challenges that they already face, wouldn’t it be the perfect scenario for them to succeed? I realize that this is much easier said than done. It takes lots of practice. I am not an expert by any means, but I do know that my awareness level is on track. That is step number one…

A key to this is living in the moment. Are you?

When I feel like I am living in the moment, I feel more calm. I can embrace what is happening. I can be grateful for where I am at, no matter what the situation. At this stage in my life I don’t believe in coincidences anymore. Life is always teaching us something. We have to open our eyes and our minds and be free to see it.

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Sometimes you just need an eye shot of a cute butt to bring a smile to your face. This cute butt works for me!! 🙂

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When I really feel off, I am going to bring my mind to this moment. Jasan. Beach. Waves. Running. That smile that melts me. Sunshine. Beautiful places on this earth that we can travel to see. The feeling of sand in-between toes. Watching him discover this beauty surrounding him. Sounds. Senses. Umbrella drinks. HAPPINESS.

It’s all about mindset. It’s worth it to me to keep a balance. For my own well-being, but ALSO FOR MY SON.

Crash!

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The crashing. His body needs it at certain parts of the day. His sensory system craves pressure to regulate. I realize this about him, and I get it. But I have to admit there are times when it drives me crazy. For example…

In stores or shopping areas.

When we are around people we don’t know.

When we are around people that don’t have any patience.

When we are at a restaurant.

Or…

When I am just NOT IN THE MOOD to be ran in to. 🙂

I could keep going, but you get the idea, I’m sure.

So, with that being said, I try my best to keep my thoughts on the positive and to work with him instead of against him. Instead of getting annoyed and telling him, “No!” (which just fuels the fire anyway,) I assimilate. If we are out and about, then I pick him up. Swing him around. Get goofy with him for a bit. Make a game out of it as much as I can. Go for a walk. Chase each other. Whatever I can do depending on the situation. Sometimes it works, sometimes it doesn’t. I know it’s the way he is wired. I want to love him and help him be who he is.

This summer, we did a lot of “crashing” in our gazebo.

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Do you have ideas for your child(ren) when they need to sensory regulate and it’s inconvenient in the current momentary situation?

Please share. (I could always use more!)