Your Tour in Holland with baggage

I started writing in my blog ages ago. Like everyone else out there, I had something to say, and this was the place for it.

And just like everyone else, sometimes life gets in the way. Things change, children grow, and then you sometimes find that you have something new to say. Only, you may not want to "say" it per say, but you need to get it out. So, just like that, I'm taking up coming back here to post things I need to get off of my chest.

It's work being married, we all know that. Some of us go in blind, thinking happily ever after will always just be there. Likewise, some of us go in knowing that it will be work; that your partner and you, will grow. Maybe grow apart and you'll have to work to grow back together. Either way you look at it, you're still not prepared for the curveball that life, fate, God, etc, can throw at you...

You wake up one day, a parent. Which in and of itself is hard but, nothing so traumatic that you just wake up one day and decide you can't do it anymore. Except, some of us wake up as parents - in Holland.

If you're a special needs parent, you've probably been handed that poem. It's a pretty accurate description of life as a special needs parent too.  If you're married though, and a special needs parent, Holland is only one of your perspectives. One spouse is grabbing the tourist guides, train schedules, and maps. While the other one is fully refusing to step off of the plane.

That's okay too. I mean we all deal with things in our own ways, so the fact that your spouse is still eating the peanuts and rewatching the inflight movie, while annoying, isn't such a shock. We, as the accepting/learning spouse look up a week later, and they're just now getting off of the plane but, haven't left the airport. While you could do the donkey thing, lasso them, slap a bridle or something similar on and then try to drag them to water, and most of us will at some point, in the end you learn it will do no good. They have to come to terms on their own.

At some point, if you're still with your spouse, you will find that you've explored the entire country and he's just now grabbing maps, written in latin. You're on one end of the country and he's on the other side. At this point, it is so very easy to be beyond aggravated and loose it with them. If you went into your marriage with open eyes though, you will realize that at this point -after you've lost your mind- he's off the dang plane!! He's not completely blind anymore, he knows where he is and he's attempting to follow his ridiculous latin map to where you are.

The problem at this point though is that we don't see that. We don't want to go all the way back to the airport to show him how to take the bus, the train, or taxi. We know that it's so much easier to just keep going with your angel of a tour guide. We can no longer be bothered to catch up our partners. It's the first mistake WE make in a partnership/marriage. This is our part of the problem in the relationship. We have to acknowledge this and accept it.

If we're really strong, and have any ounce of energy, some of us will backtrack. We'll take our tour guide and hike back over some steep hills, crazy roads, and sleep in tents on the side of the road - because we've now run out of currency waiting and waiting for them to catch up. As frustrated, and exhausted as we may be, we do it and we make it and we literally hold their hand to cross the first street. It's enough to give you faith that maybe you'll get to the other side of the country before your time there is over.

So, you hold their hand through the second intersection, teach them how to hail a cab, and order food. The promise of a great stay so close in hand.

Then it starts...

He doesn't want to eat what they have to offer at chez Holland, and will only eat American burgers. He can no longer be bothered to check the map to see the destination. He refuses to stay in the tents hat you've made on the journey and books a 5-star hotel room for himself every night, hoping you won't notice. To the people along your journey, he smiles, talks the talk and will pretend to walk the walk but, when it's just you, he can't be bothered because it's too hard. Or he doesn't understand while he has to meet your tour guide in the middle to make any leeway on the trip.

This is where the constant fighting begins, fighting that in the beginning you do because you LOVE your family, you want to keep it together, and you want everyone to be on the same page. Which eventually will turn into resentment, for all the things he will not even attempt, for being such a spoiled brat and needing everything to be about him, or for all the hotels he booked only for himself, and the meals he's ruined by refusing to sit at the table because it's not American food.
Which eventually turns to no longer arguing for those things, not even caring about them. You simply argue now, because he disagrees with your tour guide at every avenue. He thinks the tour guide is too slow, too fast, missed something, took a wrong turn, etc., and you realize that not one single day has gone buy where you've not argued over your tour guide and how wrong your partner thinks the tour guide is.  Eventually he just stops pretending, stops showing up at the local restaurants, he stops participating in some cultural tours, he's dragging his feet along the way, slowing you all down, way down

At one point he just stops pretending even, and the things that he will say or do, are mind boggling. Until one day, they're just not.. Until one day, you wake up in the tent you and your child(ren) have painstaking put together time after time, after time. The tents that allow you to see Holland from different perspectives, to see sights that no quick tourist gets to see, you get to see Holland for the beauty it really holds, and you don't want to meet your partner at the hotel parking lot, you no longer want to attempt eating with him at the restaurants. You do what you've already been doing for ages now, you plan and go on without them. It sounds cold but, it's already happened. He didn't notice or care and your tour guide? Well, your tour guide vaguely registers him anymore. If he's there when the tour guide is, that's great but, when he's not the tour guide still thinks it's great. It's no big loss to them and in fact they prefer being with only now.

This is the beginning of the end, and the only one who doesn't notice, is your partner.    

   

Distracted

Life with children is....hard. Not in a bad way, nor a poor pitiful me way. It's just hard to balance it; to get it right. They don't come with instructions, there is no one there really to fix what you break, or erase your mistakes. It is just is what it is and having two special needs children, in my most likely jaded opinion, is truly hard.

My youngest son fell asleep tonight, after his meds kicked in, well before his brothers. As he laid there in my arms and I sang our song to him and kissed his soft, sweet, little forehead, I thought of everything I miss with him. All the things I let slide between the cracks, while I coax my oldest into trying something new (i.e. doing what's "normal"). I watched him breathe and thought of all those times I've taken him for granted while I worked on calming my oldest son down. I held his little hand and thought of how many moments I've missed because I was focused on how to adjust my teaching style to adapt to how my oldest son learns. I held him and felt his heartbeat and realized how blessed I was to have him.

Despite his communication faux pas, his frustration when the lines of communications break down or his struggle to make sense of things, he's still such a great boy. He's always happy for the most part. He's the first one to offer a cuddle - granted it's ad nauseam some days, but at least he voluntarily hugs me. Lets me kiss his soft cheeks, and hugs his small little body back. He laughs at butterfly kisses, give me regular mohawks with whatever pretend thing he has on hand and wants to fix everything all the time. Even if it's not broken!

I think life with two children is like this anyway. No matter if you have special needs children or not. Inevitably you feel like you're failing one, neglecting one, getting...distracted. Before you know it, time has somehow just flittered by and the child before you is no longer a baby; a toddler.

I've sat here for hours now wondering how I can keep him involved, engaged. There are just no easy answers. When my oldest son meltsdown, my youngest needs to latch on to me. Only, he can't because I must get my oldest out of the room for everyone's sake. Or if my oldest meltsdown minorly (by our standards of course), but loudly, my youngest covers his ears and either disengages from all of us, or simply leaves and goes off on his own. Usually not wanting to be disturbed.

I hear the statistics too, you know? How this generation of "neurotypical" children will live with their parents until well into their 30s. How special needs children don't even graduate highschool until on average they're 21. So, in reality, I'm sure I will have plenty of time to make it up to him, to both of them. It's just tonight, laying with him snuggled next to me, out like a light, brushing his soft hair to the side, I felt bad.

I'm sure, since they are so young right now, I will work it out in time. Tonight, listening to him hum in his sleep though, I wished I'd had this figured out now. All I could do, was bend down and whisper in his little ear, that I loved him always and no matter what. I kissed his small, warm cheek and carried his limp, sleeping body to bed and tucked him in. Hoping that somewhere in there, that just this once language doesn't get jumbled up and that my heartfelt words made it to where they needed to go. I hope he heard me, I hope he knows and always remembers.

A Look Behind the Autism Curtain...

Like it or not, diagnosis isn't the end of the world per say. It's the beginning of another.

Each day bringing new surprises, the good and the bad. Bringing new discoveries, new practices, new experiences...each day is just that new.

Today, my day was bad....really B.A.D.!

I'm sharing what a real day is like with two Autism/Sensory kiddos (and then some) because most people don't have a clue what we really go through. I've carried my oldest son out of one too many stores to ignore the glares, the shocked looks of horror and the condescending sneers, not to know this.

So, today this was my day....

I took my oldest to his PT (physical therapy) appointment. My youngest and I went to an indoor playplace at our usual spot. He refused to play though, because it was too quiet....have I mentioned he hates noise and covers his ears quite frequently and screams?!

Pick up my oldest son and head out to get lunch before the next appointment. Mind you, I didn't schedule the appointments this way, they rescheduled and my oldest son, truly needs these appointments. So, the boys don't want to go to the usual place, they want to go someplace "new". New in my head is codeword for MELTDOWN! I shudder in fear and try to talk them out of it. They insist - I should say, my oldest insists that they're fine and can handle it. My youngest only understands "new playplace", he's all for it.

We get there and oh my goodness, the noise was unbearable to me!!! My boys were so excited that they didn't care though. My oldest son disengaged several million times from play and from his brother, never once did he engage another kiddo. And when someone pushed him from behind, the interrogator came out. Every kid that went down the slide after, was drilled about whether they pushed him and where they were when he was pushed. I was a tad on red alert at this point, but the other half of me thought: Aha, socialization!

Not even ten minutes later, bring on the reign of bullies. The same three boys, over and over and over again, began to take over his spot. Literally shoving him out of the way. Now he knows that though these guys tower over him, they are his age (he's very small for his age though). So, at first he tries to reason with them. One of them calls him a baby or something to that effect and then they ignore him. Needless to say, my hackles went up and they were separated. This happened several other times and I decided it was time to go, very much to my oldest's dismay. He attempted to regulate himself before we left by sitting on this spinning thing in the toddler section and spin repeatedly.
Now mind you, my youngest while verbal, doesn't do receptive language. Meaning you can talk to him, he may agree, even say yes or no, but chances are, he doesn't have a clue what you're saying. So, while it's clear when he's with other kids that he doesn't "fit in", they always sort of accept him and welcome him in. They never do this for my oldest and it's hard on him, because sometimes he notices and other times, he wants to play with his brother and notices that brother isn't around.

Anyway, long story short, we get to their OT (occupational therapy) session. My oldest begs them to go first because he's "had a bad day". They go check, but have scheduled testing for my youngest, who always does OT first anyway, so he has to wait. This sets my oldest off, just for a few. I wouldn't be mom, if I couldn't reign in mini meltdowns. :)  This should've been my warning right there, but I didn't listen.

Two hours later, when it's time for him to go, he's wasted too much time and lost his free time at the end of the session. Which is not to his learned schedule. So, of course, he meltsdown. At one point, he sees something out of place and NEEDS to replace it. We tell him that they can do it, because he's already yelling loudly. This panics him and he's yelling and screaming much louder, and backed himself into another room. By this point, I'm trying to retrieve him because the OTs, all three of them, have another kid there waiting and my son is scaring the grandmother to no end, the boy is starting to look upset and he's scaring my youngest as well. I get him out of the corner and then he becomes hysterical. As I'm trying to reach down and get him off the ground and out of the building, my youngest son, who is now freaking out because his big brother is so loud, has clutched not only my leg in a death grip, but he has my arm as well. So, I can't get a hold of my oldest son.
I finally get a hold of him, and let me tell you, with an autistic child, that is not easy feat in and of itself! As I'm making my way out of the door with this kicking, screaming child, my sweet little 5 year old knows the drill enough that he picks up big brother's lovies on the way out of the office. As I struggle to keep hold of my son, his little brother gently and lovingly places his big bother's lovies next to his car seat, climbs in and sits in his carseat like an angel!
In the meantime I'm no longer able to keep hold of my son and have him sort of pinned to the parking lot outside the opened door to his seat. This sounds bad, but he's trying to bolt back inside and fix the object still and he's screaming bloody murder. I somehow manage to get him in the backseat and this is how ingenious they can be in a meltdown when compelled to finish a compulsion, he wedges himself completely under the passenger seat, from the back! Now, I can't pull him out with the back seat, jammed in his back and I am unable to reach under to get him to bend his legs.
Little brother though, knows the drill. He sees his brother look at the open car door on his side and he immediately jumps up to shut it. I could've kissed him, had I been able to let go of my oldest. Now the only open door is behind me. So, I hold onto my son as best I can, rocking him, sweating, crying, assuring him that he will be ok, that I understand what he feels he needs to do, but that he'll be ok. After almost 20 minutes, I'm able to stand up and let go of him. He's still yelling, crying and huffing a little, but he's no longer ready to bolt. Which is good because my back and knees are broke and my arms feel like they weigh fifty pounds.

After several more minutes of me calmly talking to him, he agrees to get back up in his seat. And just like that, it's over for now. All this over the need to stay on schedule and to put something away where it belongs!

To anyone outside it looked like a spoiled child, or that he might've been reacting to me holding onto him, but this is our life. This is what we do. We deal with this every single day. And this is only one thing, one page, one instance. There are those of us who have it much worse, those of us, like myself that have two autistic kids in the house. There are those like my sons that have not only Autism, but multiple other comorbid conditions. Our life isn't always pretty, it's not always bad either, but what we really need more than anything - good or bad days, is a little less judgement from the average joe.

The next time you see that mom struggling in the store with a screaming kid, do me and the rest of us a favor, don't judge, don't glare, just don't! Take a moment to notice that we might be struggling, that our child may not be loosing it over a toy, that we may have two with special needs. Take a moment to tell us that we're doing ok, that you aren't there to weigh us down with more baggage we don't need.

Be humane to us, be compassionate, be kind. We will ALWAYS return the favor, whether to you, another stranger or another comrade in arms. We never take the things for granted that the rest of the world does. Please remember us, the next time you want to sneer at a screaming child and do what is RIGHT!

Autism...Hear Me Roar!

It's been a heck of a month. It really has. As September quietly, beautifully slips away today and October sneaks up, I can't believe that another year has gone by. I can't believe that I've lived through this last month. I can't believe all the changes that have happened in just 4 short weeks.

My youngest, who is on the spectrum, is finally in speech therapy again, after being on a wait list for 6 months. I was told, it will be intensive and require a lot of "drilling" at home. Sounds fun, doesn't it? My oldest, who has Tourette Syndrome, Intermittent Explosive Behavior Disorder, ADHD, ODD, OCD, etc. is now being tested for ASD as well tomorrow. 

My youngest who despite his diagnosis, was always pretty easy to handle, has become increasingly agitated where his communication gap is concerned. My oldest, has melted down repeatedly every day to epic proportions. And while I know the word "epic" is used so passively now, I assure you this is the only world that does what happened with him justice. In one day, I carried him out of 3 different grocery stores as onlookers stared, gave disapproving looks, and pulled their children away from - even though they were easily several hundred feet away. I suppose to some degree it was my fault, after the 1st meltdown I should've packed it in, but I had to get that stuff done that day.

My youngest, was put on medication to help his attention, which is suppose to help him with his communication in the long run. And while I tried for two years to NOT put him on meds, after going to the bathroom for seriously only 60 seconds, I came out to find him dang near on top of my fridge. Mind you, my fridge stands alone in my kitchen, no counters are anyway near it. So, I agreed to give him a small dose of medication. It's not a lot and he's still all over the place, but at least now I can go to the bathroom without worrying he's going to set the house on fire or get himself killed!

My oldest, I fought for 3 years to keep off of a certain medication. After 6 months of violent meltdowns, and most of them in public, I finally gave in and tried him on it. He's been on it all of 2 weeks now and while he now has minor meltdowns 2 - 3 times a week, they're manageable. Granted I had to chase him down at my mother's apartment when he bolted out the door because I was going to wash his dirty face, but that was mild. Though, I'm sure her neighbors loved watching me get my son in the grass, wrap my legs around his, bear hug him with one hand and wash his face with the other! I suppose though, at a retirement village, that would be exciting entertainment!

I started taking a chance as well. I began to not only take part and end up heading my state's Dyspraxia Foundation chapter, I decided to start taking part in the local Autism Society. I was worried, because my oldest son is verbal, he's ahead for his age actually. My youngest son has great expressive language, for the most part and he struggles with the receptive language, but he's verbal as well. So, I thought that because neither boy was so far down on the spectrum, that we'd not be welcomed or fit in anywhere. 

So, I dipped a baby toe in. I began participating in their online support group for moms. Then I signed my oldest son up for soccer. A special needs soccer team, filled with every kind of special needs, not just Autism. Which has opened so many doors for the boys and for me. 

I've always been the kind of mom who gives herself to everything she does and most especially her children. Which those of you out there who actually read this know, that is not the smartest thing to do really. It's like the flight attendant who tells the parents to put the mask over their own face before their child's. I never agreed with that before, but now I can see why and most importantly, I agree!

As I've learned more and volunteered more, put ourselves out there more and connected with other mothers close to us, I've realized how much we all have in common and it's amazingly freeing. I was speaking to one of the heads of the local Autism Society and I was suddenly saddened to hear her describe the reason many mothers or families didn't participate in many of the activities. It's the same reason I never participated prior to now...I felt that because my kids weren't verbal we'd not fit in, so to speak. She tells me that the moms of kids who are non-verbal feel the same, that because there are so many of us with verbal kids they feel like that don't fit either. It breaks my heart to hear this. I wish so many more of us would get out there, share our stories and whether or not we're from verbal or non-verbal families, realize that in the grand scheme of things, we're all one big family! We all need to stand up together and educate, push for better legislation, better insurance coverage, better IEPs. We need to stand up and ROAR! Not be sitting on our own side of the respective fences and be afraid to put ourselves out there. We all know the behaviors, we all know that no child is the same and it's truly sad that we're not willing to come forward more and be apart of something special. If you know someone who is afraid to come to a local autism event because either they're child(ren), are verbal or because they're non verbal, please encourage them to just get up and out and participate! I can't tell you how essential our mental health is as the caregivers to our kiddos. Please take a minute and support yourself, or if you are the caregiver reading this, please stop and do something for yourself today. Most importantly, connect with other people in your local community, you need that support. Lets all roar together!