“Sensory Sunburn”

My good friend from Quirks and Chaos was asking me about pain and sensitivity when you have sensory issues.

(I love when people ask me questions because I think of things to say that I normally wouldn’t just come up with off the top of my head.) So props to her for helping me come up with this. Lol

I think the reason things can seem a lot more painful or even less painful to some people is what their skin (or whatever) is over or under sensitive to.

If the outer layer of our skin is super sensitive, we’re going to be able to feel things on it a lot more than other people would who don’t have over sensitive skin.

It goes back to being sensory seeking or sensory avoiding. If our skin is super sensitive or our nerves are over active then we’re not going to either want something touching us or we’re going to need something touching us (like weighted objects).

I think the best way to look at it is like you have sunburn. When your skin is really badly burned, you don’t want anything touching your skin. Everything that touches your skin, even the wind blowing, you can feel it on the surface of your skin. Your skin is over sensitive.

So when our children (or us as adults) freak out because the seams in their socks are obvious or the tag on the back of their shirt is bothering them, the best way to think of it is like they have a sunburn.

If they had a sunburn you would be more accepting and willing to forgive them for being over sensitive to the fact that those things are bothering them. Because it’s something you understand and can relate to. But just because you can’t see that metaphorical sunburn, doesn’t mean that it’s not there.

I think that goes towards pain in general.

Some pain I can deal with and some I can’t… Just like some noises I can and some I can’t.

Also, the anticipation of pain is worse for me at times than the actual pain. (Anxiety).

How do you really feel about Autism?

“I would love to hear how you really feel about the boys possibly all being affected by ASD. And if you think you would have another baby.”

So, I was going to try to make a video about this, but when I did… it ended up being about 20+ minutes long. lol Sooooo I think I’ll make this one a blog. I’m sorry if you guys would have preferred this one to be a video.

I know that I am going to get bashed no matter what I say.

There seems to be a huge divide over Autism being something that should be celebrated or something that makes life harder.

I think it really depends on who you’re talking to, the severity of the “symptoms” and how they were taught to look at it, or how they choose to look at it.

Please remember that everyone is entitled to their own opinion, and just because ours might be different, doesn’t mean I don’t have feelings. I’m a very sensitive person and do NOT have thick skin. I don’t mind people disagreeing with me, but I do mind when you’re rude about it. So, please be considerate.

I diagnosed myself as Autistic with ADHD about a year ago after doing research, talking to others and taking tests for about 6 months. I do some day plan to try to get an official diagnosis. So I feel that I can speak both as an Autistic and as a Mother of Autistics.

Because I didn’t know I have Autism, there are many aspects of my life that were difficult. However, some of the things that are seen as “Autistic” that would normally be hard for some, I’m pretty good at, or I’ve learned to be pretty good at. I can socialize and make small talk in conversations… although I’m not a HUGE fan of it depending and it can be draining. I’m pretty decent at public speaking (at times). I had to practice a lot. Eye contact isn’t too bad for me most of the time. I can hide my stimming (depending on how long I’ve been made to sit still). And every day I’m getting better at dealing with being overwhelmed.

But despite my Autism and despite NOT knowing it, I really think that I would have had a different life (better relationships) had I known (or got a diagnosis as a kid)… I am still functioning. I am still growing and thriving. Heck I’ve got three pretty awesome kids, I got my cosmetology license, and plan on going back to school to become a Speech Therapist. Is my life what I wanted it to be? Not exactly. Could it have been what I really wanted if I wasn’t Autistic. No clue. Lol

Are my kids’ lives what I wanted for them? No. I wanted my kids to be little football players… who would stand up for the kids being picked on, who would go to college, do amazing and great things, get married to the love of their lives, have kids and all live happily ever after. (short version) Could they still do all those things? Absolutely!! I’m not going to allow anything to get in their way. Including Autism.

My job as a parent is to help my children thrive no matter the obstacles. And no matter how you look at Autism. It IS an obstacle. Sure, there are many reasons Autism could be an asset. Heck, how many inventions and advancements in the world were because of Autistics?

But how many of them were isolated? How many of them struggled through life because they couldn’t talk, couldn’t explain how or what they were feeling? Treated poorly or put into mental hospitals because they didn’t know what was “wrong” with them? To say that there is no downside to being Autistic would be a lie (at least in my personal opinion). But there are ups and downs with all aspects of life.

I really think that it’s all in how you look at things. That being said… has my life been harder because of the boys Autism in compared to what it could have been like had they been born Neurotypical? YES. Absolutely yes. Especially the time frame when we didn’t know Justin and Tyler had regressed. I felt like the worst parent on the face of the Earth. We would have meltdowns just going to the grocery store. It’s still hard. Did you read my post about the strawberry syrup?! Do you know just how sticky that stuff it?! lol

They can’t tell me their wants or needs. I don’t care who you are or what your stance of Autism is… but if you were picked up, dropped off and left with no help in a place where you didn’t speak the language, you were HORRIBLE with charades and couldn’t get anyone to understand you… and you couldn’t understand them… both you and the others you’re trying to talk to would get incredibly frustrated.

My kids can’t talk. After YEARS of practice we’ve developed our own way of communicating, but I still don’t always understand them and they don’t always understand me. And if I were to talk to them as I’m talking to you, they wouldn’t understand any of it. Struggles are part of everyone’s life. But not being able to understand someone, for them to not understand you and not being able to really communicate to each other… I find that to be our biggest battle.

It’s taken us years to be able to go to the store without a meltdown.

They all still have problems with eating.

They have no real understanding of danger (like drowning or getting hit by a car).

None of them are potty trained… they can’t really get dressed on their own. We had to buy GPS watches for them because them bolting or wandering and getting lost is a real concern.

They will strip down out of their clothes anywhere with anyone watching.

Justin doesn’t know his numbers, letters, shapes, colors…

Jaxson is 20 months old and doesn’t know his own name. He doesn’t point to objects. He has one word and he doesn’t use it appropriately. He has issues eating.

At 17 months, 6 years and 7 years old… I still have never been told “I love you Mommy”. Jax is the only one who even says Mama and it’s just a sound he can make.

If I died… no one would REALLY understand them and couldn’t take care of them the way I could because I’ve been with them ALMOST every single day of their lives and I’ve made it my mission in life to truly understand them the BEST that I can so that I can advocate for them and help them to be who they were meant to be.

But these are things I generally don’t talk about. Because I choose to focus on the things that they CAN do.  The things we’re working on… the things that they’re getting better at. Sometimes it’s purely because if I stop to dwell too much, I could end up crying for hours of just being soooo overwhelmed. But just like if they weren’t Autistic… I wouldn’t go around talking about all the things my kids couldn’t do unless someone asked me specifically.

Do I want my kids to have to struggle every day to do things that their neurotypical counterparts mastered years ago? No. I don’t. Not at all. But I also don’t want my kids to ever get hurt. Does that mean I’m going to keep them from everything that could possibly hurt them ever? No. They’ll fall down and I taught them that they get up, brush it off and keep going. If they’re really truly hurt, they know they can come to me, I’ll help them clean up and offer support, but I’m teaching them to be fighters. Because in this world mostly dominated by neurotypicals, they’ll need to be fighters. To get what they deserve and what they want in life.

Would I have another kid? NO! lol I actually wanted to adopt all of my kids… don’t get me wrong. I love my kids, and I wouldn’t trade them for the world and I don’t regret having them for even a second. But no… I wouldn’t have any more. Their Dad and I actually talked about not having any more kids and possibly adopting a little girl after a few more years (maybe once the boys progressed more) just a few months before we found out we were pregnant with Jax. (ohhh the irony lol)

We believe that Autism is Genetic and we obviously are making Autistic kids, and didn’t want to chance it that we would have another baby who was Autistic. Not because we are against Autism… or that we don’t like Autistics… but 1: we really wanted a girl (kind of glad I had a boy though lol) 2: we weren’t prepared to have another kid (especially right away)… because the older two still needed a lot of our time and attention, and finances are tough. 3: despite the fact that we love our kids no matter what, we didn’t want to knowingly have another child who may struggle the way the older two are struggling. It’s not fun to see your child hurting… but it’s even harder when your child is hurting and they don’t understand why and you can’t explain it to them.

But we did have another baby… and it’s been obvious to me for almost a year now that he was also Autistic. (We’re going to be starting the process of getting him diagnosed within the next week or so). I don’t believe in abortion, but even if I did, and I had known beforehand that Jax was going to be Autistic too… we still would have kept him. There was actually a very small possibility that because of the meds I was on when I became pregnant, that Jax could have been born with shorter arms and legs. His body would grown normally, but his arms and legs could be stunted. And I told the doctor then, that he could be born with two heads, it didn’t matter… we’re keeping the baby no matter what.

One thing I do want to say… is that all Autism is different. There are no two Autistics that are the same. If you would have seen the boys four or more years ago, around the time they regressed and compared them to what they are like now… you’d be amazed. Just like with Jaxson now. In 4 years he’s going to be doing so much better. Autism is not a death sentence. And no matter what age you or they are, there’s always time and room for improvement.

So don’t give up and make sure to get them the therapies that they need and deserve. Everyone needs something a little different in order to grow to be who they were meant to be, and it’s okay if they need the extra help.

And you know what, if I wasn’t or my kids weren’t Autistic… I wouldn’t be talking to you right now. I have no clue what God has in store for any of us… and maybe His plan for me is to raise my kids and talk to you guys. But who knows what these kids are going to do. Just because the future I wanted for them might not happen… doesn’t mean they don’t have a future at all. Let alone an amazing one full of potential. 

Do we still have bad days? Yes. Are we still going to continue to have bad days? Yes. But everyone does. It’s how we choose to deal with those bad days that matter. Granted, writing this… we’re having a bad day… and it sucks. And it’s hard. But we still TRY to look on the bright side and push through. Praying that things will calm down and tomorrow will be a better day.

I hope this answered the questions…. I talked long enough that you’d think that I would have had to by now… but I ramble so much and go off on tangents… lol Maybe I did… maybe I didn’t. I hope I did though.

If you have any other questions, or topics you’d like me to talk about, leave them in the comments. 🙂
Love you guys!!! And talk to you later!

Hypervigilance

not blood in the picture

I’ve wanted to write about this for a while now… but every time I wrote something, I didn’t like it and deleted it.

Although it’s an important topic, I just couldn’t say what I really wanted to say. Words are often lost on me. Until I have a personal experience to help me find the right words, and even then, I’ll have a friend write about the same topic and think YES! Why couldn’t I say it like that!

We often hear those sayings “You can’t pour from an empty cup”, “You need to help yourself before you can help others”, etc… And generally, I agree with those. You don’t really get burned out when you’re taking care of yourself in addition to taking care of others. And working with kids… that would be a good thing!

There have been so many years where I’ve just not been able to take care of myself but still needing to take care of my kids. They come first… and it’s not like I have a choice. I don’t have help, so there is no other option.

But I started using these oils and my overall state of wellbeing has changed. I’m not as stressed out, I’m not as depressed/anxious… sure I still have my moments… but despite our situation not changing, my outlook on it has.

Which makes me WANT to take better care of myself… despite not having help or not being able to get out of the house and away from the kids.

One of those things is eating better. I prefer not to cook when the kids are awake… which means I tend to eat more junk or things I can put together quickly. Like cereal. Which sucks, but it is what it is.

So today, I decided I’d make spaghetti for lunch! It’s pretty quick and better than ANOTHER bowl of cereal.

All the kids were being relatively good.
They were being loud, but that’s nothing new.

So I started making food… Tyler kept coming over to me, asking me to take screen shots of his characters he paused his show on. Justin would be running in the house and then back outside. Jax was making his “I’m yelling because I’m happy” noises. It was a little chaotic, but nothing too bad.

I set up the kids and their lunch while I was finishing mine. We all more or less ate at the same time (which NEVER happens)… And then came the, let’s chill out time after lunch. Usually we turn off the lights and just hang out (usually because my migraines are worse around this time with the kids… they can be REALLY loud… weekends are hard for me and my head). So we were all just hanging out, I was sitting down to go through all of your replies on my posts when Justin started screaming and crying.

Ugh… now what?

“Justin. Come here.”

Crying and crying. Not crying because he’s hurt, but crying because he’s upset over something.

“Juuuuustiiiiin! Come here.”

Crying.

“JUSTIN!!!!”

I know it’s the iPad. It probably needs restarted and I’ll admit, I was being lazy. I was tired and just wanted to sit down for 10 minutes.

He comes out of his room. Rubbing his eyes. He hands me his iPad and it’s sticky!
What in the world???

The screen was sticky and he couldn’t slide his finger across the screen to turn the volume back up. I cleaned it off and handed it back to him. Which is when I realized he was kind of pink. I touched his hands and they were REALLY sticky… so were his legs, arms… what in the world?!?!

I took him outside, rinsed him off with the hose, got him dressed and sent him to the living room. Then headed for his bedroom…

That’s when I found the reason he was sticky.

My jaw dropped.  

It looked like a horror movie.

Only instead of fake blood… it was strawberry syrup.

I’m STILL trying to get it all cleaned up.

What does this have to do with hypervigilance?
If I hadn’t been cooking… I would have been watching the kids closer. I would have noticed one of them taking and carrying the syrup in the room and would have stopped them before they squirted it ALL OVER their bed.

I can never let my guard down.

Never.

Because someone is always getting into something. Someone is always climbing something, trying to open something, crying or screaming about something or wanting something. The second I let my guard down… something breaks, gets destroyed or someone gets hurt. And that’s in a house that I have specifically altered FOR my kids. There really aren’t TOO many things for my kids to get into that they really shouldn’t. As long as I’m staying focused.

We don’t have pictures hanging on the wall, we don’t have nicknacks. We don’t have anything glass in our house except lightbulbs and we can’t keep spares around the house. Tyler likes to drop them on the ground to hear them crash. We don’t even have cups any more. We drink out of soda/water bottles because our kids love water/liquid so much that they will take cups off the counter and pour them on the floor to play in them. I have to hide the knives because Tyler likes metal things and Justin likes to line them up. Chemicals and cleaners have to be up high and out of reach, because just out of sight out of mind doesn’t work here… and if it’s a liquid it’s meant to be played with. Which is why the bathrooms are locked. They’ll turn on and play in the sink, toilet and bathtub.

We used to have to have locks on the pantry doors, fridge, oven, microwave and some of the cabinets. Because no matter how on guard I am constantly… I couldn’t keep them out of everything. And you can only say “We don’t stand on the oven door, because it’ll break. Close the oven, and let’s play with Lego’s” so many times before you might snap.

Sure, eventually things got easier. They even know that they bathroom doors are supposed to be shut, so if someone forgets to close a door, they’ll go over and close it for us. We don’t have to worry about the kids playing in the fridge much anymore either. Because they know they’re not supposed to. Tyler will still occasionally get the eggs out and throw them on the floor… sliding around in the slime when I’m in the bathroom. Or lining up the sliced cheese. Justin will try to stack enough toys, boxes, shoes and trash cans high enough to climb on the counters and get into the gummy bears while I’m giving Jaxson a bath because he managed to get his diaper off… again… and is now covered in fecal matter.

And as insane as these days are… they are getting a little less frequent… or at least they’re smaller messes. Mostly because I’m constantly watching them, constantly on guard to make sure things like that don’t happen. My house is constantly trashed… and that’s with me being able to catch most of the messes in action or prevent them because I can see where they’re going with their ideas.

I’m always tired.
During the week when the older two have school it isn’t so bad.
But weekends, holidays and breaks definitely remind me why I’ve been in “survival mode” for SO long. And I don’t realize that I’m not really in survival mode any more, until I’m reminded what it really looks like… on weekends… holidays and breaks.

Because although things HAVE gotten a little better… I’m still a long way from being able to sit down and not have to worry about what my kids are getting into.

Hypervigilance. An Autism parents state of being. And it’s exhausting.

Breastfeeding fail

I always wanted to be a Mom.
I didn’t plan on having kids at 19… and I actually planned on adopting all of my kids; but life rarely turns out the way you “planned” it to be.

I’ve worked at Daycares and I’ve volunteered at Children’s church, in the Nursery and even at a Pregnancy Support Center. I LOVE kids and love helping pregnant women.
Although I didn’t plan on having any of my own kids, and definitely not before 30, I was still so incredibly excited when I found out I was pregnant. I tried to do everything right. I ate better, I took all of the prenatal pills (plus a few others that were supposed to help the baby)…  I stopped smoking the second I found out. I avoided people who were smoking like they had the plague. I wanted to give my baby the best possible start to life.

So I had already decided that I was going to breast feed. I didn’t buy any bottles, because I wasn’t going to need them.

I had Justin and the nurses put him on my chest. I remember looking down at him and thinking just how perfect he was. In every way.

They had me try to breastfeed right away, but we were having some issues… my colostrum didn’t seem to come in so he didn’t want to latch on.

“It could take a day or even two after the baby is born before your body starts to produce milk.”

I was incredibly disappointed, but it’s okay. My milk will come in.
We used the formula the hospital provide and I used a pump to help my body figure out what it was supposed to do.

We were in the hospital for two days before I got to home. I managed to pump out maybe a ¼ of an ounce in that amount of time. We left the hospital with some formula that was already in bottles so we still didn’t feel like we needed to go out and buy any. I still knew I could do this! It’s what my body was made to do!

A friend of mine was a lactation consultant, so she came over and helped me try to get him to latch on. It really didn’t go well. He was already so used to the bottles from the hospital. I was getting upset and frustrated. So we decided the best course of action was to continue feeding him with bottles, and I would pump.

Every time he woke up I would change him, feed him and put him back to bed… then I would pump. It was exhausting. And I still was only able to pump about an ounce at a time.
I felt terrible. The one thing I’m supposed to do as a mother. I can’t even feed my own baby.

He was four days old when we bought bottles and formula. I cried when I asked my husband to go to the store to buy them. I felt broken. Incapable.

After a week of still only being able to pump 4-6 ounces in 24 hours I felt like a complete failure. I got depressed. I was frustrated…
I kept at it because even a little was better than none. But by the time he was 6 months old, I stopped.

It was about that time that I found out I was pregnant again. I was TOTALLY not expecting, nor planning to have babies back to back. We were so not prepared. Heck, we weren’t even prepared to have the first. But, I love kids and was excited.

Tyler was born and I wanted to try breastfeeding again. But this time I had bottles, my pump and was more prepared.

I tried very shortly after he was born… he latched on and I felt like I could really do it this time! This time would be different! I had also found out that my Thyroid problem was probably the reason I was having such issues breastfeeding.

After he fell asleep, I pumped just to be sure to get every last drop! And nothing… So… did he eat at all? Or just fall asleep and use me as a pacifier? I pumped and pumped and pumped… and still, I wasn’t able to make more than an ounce or two in 24 hours… But again, I figured any was better than none.

But by the time he was about 4 months old, I was so depressed and so exhausted and didn’t have the help I desperately needed. So I stopped and continued formula feeding. Again… I felt like a failure. I know any is better than none… I know at least I tried. But do you know the shame you feel when every time you go to the doctors and they ask you “And are you still breastfeeding?” and you have to answer no? Or yes… but I’m only pumping 4-6oz. “Oh, in one session. That’s okay, and can be normal.”  No, I mean in a day. “Oh. That IS odd. And you’re pumping every time the baby eats? You’re trying to get them to latch on? Because it’s best to breastfeed until a year old.” Really? I hadn’t read that in the handful of books I’ve been reading and crying over for the last few years (counting the time frame from the first kid). Thank you. I didn’t know at all. *eye roll* Which did NOT help with my depression.

Four and a half years later, I had my third son. Still a complete surprise. We had actually been talking about adopting a little girl in two years a few months before we found out I was pregnant. I had Jax, and they laid him on my chest… and this strong little boy lifted his head off my chest and looked at me within minutes of being born. They asked me if I wanted to try breastfeeding… and knowing my history, I declined. I figured I’d pump for as long as I could, and pump as much as I could, but I wasn’t going to get frustrate or depressed right then and there. So they gave me a little bottle of formula and he drank TWO OUNCES just minutes after being born. They say that a baby’s belly is only the size of about a Cherry and will only drink about ¼ – ½ of an ounce when they’re first born. Well let me tell you, my milk production would have NEVER kept up with this little man!!

I pumped for about 3 months, but taking care of a baby and two special needs boys by myself (their Dad works 12 hours a day, 7 days a week)… it was so much harder trying to pump and take care of everyone. I still was only about to pump about 4oz in 24 hours. It hurt… and I cried. But it wasn’t nearly as depressing as it was the first two times.

I’ve learned there are many ways to be a great Mom, and breastfeeding IS one of the greatest things you can do for your baby, but it definitely isn’t the only one.

No Concept of Danger – #2

I love swimming.
I grew up learning how to swim. I think I was only a few months old when my Mom first put me in my Nana’s pool. I’m a pretty decent swimmer, considering.

When I had kids, I decided that I they also should learn how to swim. It was important to me. It wasn’t until after my kids were diagnosed with Autism, we moved 2,000 miles away and we were at the beach, that I realized just how thankful I was that I tried so hard to teach my kids to swim.

Justin was about 8 months old when we started putting him in the pool. Tyler was about the same age. In the summers, we spent every day for a few hours a day in the pool. The kids got really good at it considering! When they were 4 and 5 we moved 2,000 miles away… and pretty close to the beach.

They LOVED it.

They loved the waves. They loved the sand. Tyler was always more interested in the sand. He didn’t like the saltwater getting in his mouth and didn’t like the waves when he was trying to swim, so he never went out very far. Justin on the other hand, he loved walking out as far as he could go before I stopped him. Bobbing around in the waves. “Body surfing”.

The currents would take him farther and farther down the beach, but after a while, he was getting really good about figuring out how far he could go out into the ocean before he couldn’t touch any more.

I was huge, and pregnant at the time. We were at the beach for the 4th day in a row, when I asked their Dad to keep an eye on Justin so I didn’t have to walk all the way down the beach and into the water this time.

I did it last time after all.

Justin kept getting farther and farther. Finally I told him, “you really need to go get him. I’m scared he’s going to end up getting pulled out too far and it’s going to take us too long to get to him”.  “I’ll go in a second. He doesn’t look too far out.” he said.

I’m watching him intently. Something in my gut is telling me something is wrong. I can’t hear him over the waves… so if he’s yelling I can’t hear him anyway.  He doesn’t know to wave his arms if he needs help. I just see him bobbing.

My heart starts racing. I can feel it. Something isn’t right. “You need to go now. I don’t think he can touch.”

But before he got off the back of the truck, I jumped down and I just start running. I’m not going to wait for him to go. I can’t. Something is wrong. I know it is. I’m trying to run as fast as I can. But this huge belly is slowing me down.

The closer I get to him, the more I can see. Every so often his head goes under the water. He can’t touch!

I start praying. “Lord, please just let me get to him in time! Please. Please. Please.” I feel like I’m going to start crying. I bite the inside of my cheek… I can’t see if I’m crying and I need to get to him as fast as I can.

I run into the water, pushing hard on the ground with my feet. Trying to push through the water as fast and as hard as I can. You don’t realize how hard it is to walk through water with waves pushing you back until you need to do it quickly.

I get closer and I can hear him crying and screaming. I can see his face twisted in fear. Begging me to help him.

“Please let me get him in time. Please. Please. PLEASE.” I push back my tears again. I could never live with myself if I don’t make it in time. My soul would die.

I finally get to him. He clings to me for dear life, and I realize I can’t touch either. I can’t position him the way I was taught for “rescuing” someone. I’m treading water, trying to hold up my very pregnant self, and my 80lb kid. I’m already tired from running and from pushing against the water to get to him.

I lean forward and kick with everything I have. I try to paddle with one arm. After a few seconds… I realize I’m not getting anywhere.

I scream at the top of my lungs, “HELP!!!! HELP!!!!” Their Dad is walking down the beach towards us with Tyler. He’s still too far away. I scream again “HELP!!!!”.

He can’t hear us. I’m barely keeping us above the water. All I can think is, we’re going to die. My baby, who I’ve never met is going to die. Justin is going to die… I’m going to die. I can’t reach, and he’s not going to get to us soon enough. And I’m getting more and more tired fighting against the waves trying to pull us out farther.

I push Justin up and let myself sink to see how far away the ground is. I can’t find it. I come up for air. I’m barely keeping us both up.

No one is going to save you. You are the only person who can save you.

So I start kicking, with every last bit of energy that I have. I pull the water behind me with my arm. I don’t even look. I close my eyes and kick as hard as I can. Holding Justin up above the water while I sink lower.

Finally I feel the sand brush against my toes.
It’s working!

I kick harder.
Finally I get my footing and push off the ground, through the water until Justin can reach and he can walk out by himself.

I did it. I got us out. I finally get out of the water and sit on the sand. “Thank you Lord.”

Their Dad asks me “Are you okay?”

“I was screaming for you. I was screaming for help.”

“I didn’t even hear you.”

“Take the kids back to the truck. I’ll be there in a second.”

From that moment on, Justin was only allowed out to a certain distance, and was only allowed down the beach so far. Which, for a few weeks, HE didn’t want to go out past his knees. But eventually, he forgot about what happened, and tried to go farther. He wasn’t happy about the restrictions… but it was obvious, that he still doesn’t really understand, and it might be a long time until he does.

That day more than any other, I was thankful for all the practice we had with him learning to swim. It wasn’t until a month later that I could close my eyes to fall asleep without seeing his terrified face and end up bawling my eyes out over what could have happened to him… to me… to Jax.

I remember that day every time I think to let my guard down. That I think that he’s finally understanding “danger”. But until he can tell me “Mom, I understand”… I won’t make that mistake again.

No Concept of Danger

I saw a video today of a teen who reminded me of the boys when they first regressed… and reminded me of just how far we’ve come. We still have a long way to go, but considering where we started, they’ve grown in leaps and bounds!

Specifically, it reminded me of one of a few days where I was the most scared. I generally feel prepared to handle most things with my kids, because I overly prepare. So there are few times in my children’s lives where I was absolutely terrified. Which is a huge deal considering my kids have no real concept of danger.

This particular day was when Tyler was about two and a half so Justin was three and a half. I woke up and the kids were still asleep. Odd, but maybe they’re finally starting to want to sleep in. This was pre-melatonin and essential oils. So we usually were up until about 11pm and woke up around 4:30am assuming everyone slept through the night.

I went to the kitchen, got their drinks and breakfast ready. I didn’t want them to sleep too late, so after about 10 minutes of getting things around and not hearing them wake up, I went in to get them up.

Justin and Tyler had separate rooms; I went in to wake up Justin. He popped up, and ran out of the room to go find his drink.  I walked into Tyler’s room and saw he managed to push the A/C unit out of the window.
Ugh. Great.
Hopefully it’s not broken. I look around and don’t see him. Maybe he’s in the closet.

“Tyyyyylerrrrrr. Where are you?” I sing sweetly. I open the closet door and he’s not there. I pick up the covers… and he’s not there. He’s not in his room. My heart beat picks up speed as I start to panic. I look out the window and see his “babies” and sippy cup. I run through the house yelling for him. “Tyler?!?!”

He’s not in the house. I put Justin in his highchair and run outside. I jump off of the porch screaming “TYLER?!?!”

We lived out in the middle of nowhere. The speed limit is 30, but the cars drive at least 50 out here. All I could think was I would run to the road and see him dead in the street.

I screamed again “TYLER!!!!!!!!!” Praying. Looking around trying to figure out which direction to run. It seemed like an eternity in only a few seconds. I chose Nana’s house. She lived up the hill from us and has a pool. We were just talking about how we needed to put a gate on the steps… and he can’t swim on his own just yet.

I run.
Faster than I have ever ran.
I’m screaming his name as I run; my heart pounding. Praying I don’t find his body on the bottom of the pool. I reach the top of the hill and see him running towards me.

Relief surges through me and I start crying. I drop to my knees and hold him close. He’s smiling ear to ear and giggling.

He’s safe.
He’s okay.

I carry him back down the hill. Thanking God for watching over him.

Later that day we went to the pool to swim, and I see his FAVOITE blanket on the bottom of the pool. He never goes anywhere without that blanket. All I can think is if I hadn’t found him at that exact moment… if I had waited 5 more minute to “get him up”… would he have been down there with his blanket too by the time I found him?

We fixed his window so that he could never push it back out (even if we had to drill holes)… and my need to have my kids learn how to swim was even stronger than before.

Wandering, elopement, bolting and being drawn to water with no understanding of danger is still a real threat to our family and many other Autism families.

For us, we try to teach our kids the safe way to do things rather than keeping them away from the threats… because that one time that we may not be there to keep them from it, we’ll be thankful that they know how to be safe, even if they don’t understand the danger.

Birthdays…

Justin and Tyler are 363 days apart. Justin is 10/10/08 and Tyler is 10/08/09.
We actually brought Ty home on Justin’s birthday.

I’ve always loved birthdays.
Not really mine – Opening gifts was always weird and awkward for me.
But I loved celebrating other’s birthdays.
Because I’m glad they were born.
So when I had kids, I always wanted to try to give them the best birthday I could… No matter our financial situation, I tried to make their birthdays special. Because I was happy they were born.
Cake, decorations (even if I made them myself), friends and family… games and food.

But I noticed each year was becoming less fun for them.
They would get overwhelmed by the people.
They didn’t want to eat the food, let alone the cake and ice cream.
They didn’t want to interact with the other people or the other kids, they didn’t like their routine being changed.
Although Tyler has finally figured out “presents” and LOVES opening gifts, Justin doesn’t really like toys, so he has no incentive to open them.
He humors me and opens one, but then gets bored, rounds up all the wrapping paper, takes it to his room and rips it up into confetti.

So each year we’ve backed off on what we did with them, had less and less people over.
It’s hard for me though.
I WANT to show them how special they are to me.
How much I am thankful for their birthday.
Thankful that they’re alive and in my life.
Show them just how much I love them.
For me, one of the ways I “show love” is by doing things for people.

So when I’m not able to have the big parties for the kids, it makes me feel bad… like I’m not being a good Mom.
I’m not showing my kids that I love them because either we can’t afford it or it’s too much for them.

Then I remember that those big parties, those gifts… those are things “I” want for them. That’s not what they want.
That’s not how they receive love from me.

So, just as we decided last year, this year is going to be different from what “I” wanted…

Instead of making them go through a party where they would end up in a room somewhere with their iPads, we’re not inviting people over, we’re not doing cake (well… I might make a cupcake or two for myself 😉 )
If we can afford it, a present for each of them that they’ll actually like.
And balloons ON their birthday, because they LOVE balloons.
I’m PRAYING we’ll be able to afford Dad to take off so he can to us them to the beach. Because they LOVE the beach.
We’ll stay as long as we can, playing in the water and the sand, come home and return to our normal schedule.

It might not seem like much, but to them, it’ll be the best birthday ever… and considering it’s THEIR birthdays… that’s all that matters.