Family Vacations

We just got back from a wonderful "family" vacation in Vancouver & Victoria, B.C. We had a full week of sight-seeing, relaxing, spending quality time and making memories. It was great. Only one thing was missing. One very important thing. This was a family vacation for three - our sweet B was back home the entire time.

You see, we have a choice when it comes to vacations. We can either choose an exercise in tolerance, resilience and exhaustion or we can leave B behind. It's not an easy choice. Neither feels exactly right. We know that this was the right decision - there is absolutely no way he could have made this trip. We were continuously reminded of that: 3.5 hour flight, 1.5 hours in line at customs (NO WAY), crowds, restaurants, quiet, adult-oriented pools & hot tubs, tours, and then topped off with a 12 hour overnight delay coming home. Honestly the list is endless. He would have been miserable and 90% of what we were able to do would have been impossible. And we know that we owe it to our other son to get to experience what a vacation is supposed to be. One where we don't have to leave early, stay in a place as far away from other guests as possible, be kept up all night, and skip most (maybe all) of the tourist attractions.

And let's be honest - we NEED it too. We need the respite. A break. A break from the constant noise, the unexpected, the need to always keep our guard up, the meltdowns, the crying, the food battles, the meds, keeping track of him at all times, remaking beds from under the stripped down piles of his treasures, bathing him, wiping his hands, therapy, paperwork - all of the extras that life with B entail. And while I don't really miss any of these things when we're away, boy do I miss him. I miss the laugh, the smile, his joy and most of all, I miss feeling like a complete family. While we were gone, he was in the loving care of his saintly grandparents (a total Godsend). He went to school, followed his regular routine, was loved and spoiled and perfectly happy. He was exactly where he needed to be.

But here's the truth - he's getting robbed. Autism robs us of so many things and this is one that hurts a lot. While we may have long ago reached acceptance and love for the boy we have, there is a grieving process that happens recurrently and probably always will. We grieve for the things he can't do and the things he misses out on - the things we miss out on as a family. The things he may never do. The family life we thought we were getting vs. the one we are living.

And there's guilt. Always guilt. B is better off at home but that doesn't mean he doesn't feel like he's missing out. There have been several painful reminders of this. Like when he was around 3 and I took his brother to see family. B. carried a picture of me the entire time. I'm not sure he understood that I was coming back. When I did return, he launched into a long string of babble that, although completely incomprehensible, felt like he was telling me all about what I missed.

Or another time when he had to ride along to bring the 3 of us to the airport. And he excitedly unbuckled his car seat - ready to hop out - only to be told he wasn't coming. I remember handing him a pack of starbursts as if this was somehow a consolation and fighting back tears as we turned our backs and walked away. I couldn't look but I'm pretty sure he had tears too.

He has 2 personal suitcases that he packs with random treasures and puts in the mudroom, the garage, even the back of the car. He may not know what he's missing out on or realize that he wouldn't enjoy what we're doing, but he definitely does know he's missing out.

One of his favorite pastimes is looking through family photo albums. I cringe every time there are pictures from vacations he wasn't part of. He knows. I know he knows. And it isn't fair. It's just not. Yes, there are families who can't afford a vacation. There are kids who have never been anywhere. Not once. Not ever. But for most families, this is a highlight. Not always perfect- not even always easy (yes, I get that vacationing with little kids is an entirely different kind of vacation). But intentionally leaving out part of the family for the sake of the others - that's Autism. The part of Autism that we don't like to talk about - the darkness that we fight against every day. It isn't fair - not to us and especially not to him. But that's Autism. Fair isn't part of the equation.

Becoming Brothers

First Published on Finding Cooper's Voice  https://www.findingcoopersvoice.com/2018/08/17/becoming-brothers / AUGUST 17, 2018

We have two boys – just 15 months apart. Usually when I tell someone this, I get comments like how lucky – they will be BEST friends. Do they get along? Do they fight a lot? I bet they keep you busy.

Well, the last of these statements is certainly true but the others – I never thought it was possible but I think maybe we’re getting there.

They are now 12 and 10. Our younger son has pretty severe/ nonverbal autism and his big brother is as “typical” as a kid can be because really, what qualifies as typical?

Autism has been our world for over 8 years now – our official diagnosis came when B was 2 and big brother D was 3. And let me tell you we DOVE in.

We did full-time, in-home therapy for 40+hours a week for 5.5 YEARS. My sweet firstborn grew up so differently than your average family. Our small home was filled with therapists –sometimes as many as five or six people in our house at a time.

From our older son’s perspective, his brother had super fun playmates giving him undivided attention at all times. He couldn’t possibly understand that this “play” was actually very, very demanding and difficult work for a two-year-old. Yet somehow, he has never once seemed resentful. This is all he has ever known.

Still, the parental guilt was and is so real and so strong. We overcompensate – never wanting our older son to feel the weight of responsibility for caring for his brother. It’s been pointed out to me that it’s common practice to ask an older sibling to “watch out for your brother while I run upstairs”, “make sure he’s safe”, “can you help him do xyz?”.

Not in our house. We never asked. It didn’t seem fair.

Whenever I’m asked about their relationship, I’ve always explained it as raising two only children. The two of them function independently of one another and their worlds rarely intersect.

Big brother is so busy learning, growing and figuring out his world and little brother is immersed in therapy and his autism world. The two worlds don’t really collide. Although B always seemed to have a special affinity for his big bro, they truly did not have much of a relationship.

In fact, our older son never even spoke directly to his brother – it was always “mom, can you get B to move?” or just no acknowledgement whatsoever.  Dad and I tag team and try to give our older son as many “normal” experiences as we can while managing our very challenging (albeit amazing) youngest guy.

There’s a lot of stress and a lot of isolation and we just do the best we can.

In the last year or two, something has changed with my firstborn and it happened independently of us and in a magical, beautiful way.

All of a sudden, he started showing a strong interest in his little brother. Practically overnight, he became empathetic, watched out for him and even started talking to him. I’ve heard some wonderful things like “B, your smile lights up a room. Don’t ever change”.

And he’s asked more questions about him like “what do you think he’s thinking?” “Do you think he’s happy?” He is also interested in teaching him and in playing with him on his terms.

One time, I reminded him that sometimes B can decide he’s done and it can look like a shove or total meltdown. His response was “we’re brothers. that’s kind of what all brothers do mom”.

What is even more amazing is that he includes him even when his friends are over. He doesn’t seem embarrassed or ashamed in the slightest. I can’t tell you how amazing it is to watch. I stare in awe with a tear in my eye on a regular basis these days.

I have no idea what changed – something just seems to have clicked.

Are they best friends? No, I wouldn’t say so. But I think what they share is even more special and remarkable. They are both teaching each other in ways we never could and for that, I believe they (and we) truly are so very lucky.

Misunderstood

My heart is breaking. Again. We are having a really tough school year. Something BIG has been happening with B. I don't recognize the version of him that school is seeing. My sweet, infectiously happy lovable little boy spends at least half (from what I can gather) of his time either crying, yelling or freaking out in ways I had never seen until this year. I have been called 6 times in 13 weeks because his behaviors led them to believe he was sick. And he wasn't sick. Just sick of school.

It's so tough to be on the sidelines. I am not there to see what's happening. I can't jump in and clarify or make suggestions like I did with home therapy. With a kid who can't tell me anything about his day, this is tough. Anyone who knows me knows that I'm not sitting back silently. I call meeting after meeting, ask question after question, escalate, complain, likely drive everyone there crazy. And it's not enough. It's not getting better. I don't know what's going on but my suspicion has been that the people working with him just simply do not get him. They don't know what he's capable of and don't know how to motivate him or how to teach him. He's frustrated and he's acting out.

The amount of communication I get from the school is actually pretty good - much more than I got at his first school. I see pictures almost daily and I get a written synopsis. The synopsis is rarely positive but he looks like he's having fun in pictures. I'm trying to let go a little.

Once in a while, I get videos. This is as close as it gets to actually seeing what's going on. There was one a few weeks back where some huge mistakes were being made. Innocent, well-intentioned but just wrong.

Then there was today. I watched a video of him practicing site words and he was clearly saying "I want bus." Not just once. Over and over. "Bus. I want bus." Then, when that didn't work he switched to "me sick. I want bus." He was completely ignored and the professional continued to repeat the site word as if he was just saying the word wrong. Here's a kid who can barely talk and struggles with meaningful communication in the most severe way you can imagine. And he was trying with words to let them know what he wanted. And it got him nowhere.

He IS sick. He has a cold. I wouldn't have wanted them to send him home. I just wish they would have acknowledged that he was communicating and advocating for his needs. This is HUGE. Stop. Take a break. Let him know that you heard him and understood what he was saying. We have spent YEARS trying to get him to say more than 1 word to request something.  And it really wouldn't take much to teach him that talking isn't worthwhile.  It already is his very last resort no matter how much he wants something. Imagine how that must feel. I know how hard that was for him to come up with words to say and they fell on deaf ears.

I've called the principal and the teacher, the teacher's supervisor and the supervisor's supervisor. But I can't take it back. I'm not sure I can even make them understand why this is such a big deal. What's worse is that I can't talk to B and explain it away or make it better like I would with my other son. I can't fix it. I can't take away his constant struggles.  I can't tell him it's going to be okay. I can't make the Autism go away. Believe me, I would if I could.

Welcome to Holland

Welcome to Holland. Er, I mean Iceland. Wait - did I say Iceland? No, we are actually headed to Hong Kong. You thought we were in Hong Kong? Sorry - this is Germany.  And so on and so forth. You get the point. If you've never read it, there is a beautiful piece about having a special needs child called Welcome to Holland. You can check it out here: http://www.our-kids.org/archives/Holland.html

I think it is controversial in some crowds (what isn't?) but it resonates with me.  Except that as time goes on, I feel like we are traveling to new, completely foreign places more and more often - sometimes multiple times in one day. Just when I think I've sort of got something figured out or at least have a handle on it, B totally changes it up. Right now, this is the most difficult part of parenting our not-so-little dude. I am a type A planner by nature and the unpredictability just absolutely kills me.  For example, sometimes a trip to Target is fun and B. happily strolls about like his good natured self. So I gain confidence and set out to repeat our fun excursion. And the next time, it may start out exactly the same but then all of a sudden, out of nowhere he has a nuclear meltdown. Now those of you with toddlers are probably shaking your heads because this is exactly the way they behave all the time.  However, there are a few key advantages we no longer have:

1) A large majority of people can relate and empathize with the craziness of toddler behavior
2) You are much bigger than said toddler and can pick him or her up and remove them from the situation and
3) The toddler will grow out of this behavior. As sucky as it may be, you know that this too shall pass.

That third one is a doozy. It seems that our issues will not pass - they just morph into new, more difficult issues. The older he gets, the harder it is. I have always been a bit hesitant to reach out to support groups and families with kids on the spectrum. Each kid is so different and I honestly didn't really want to know what might lie ahead. I think this has actually been a really good decision. Ignorance can be bliss and there's nothing we could have done to prepare for it or change it in any way. I'm glad I didn't know where we were headed. Because let me tell you, it is getting SO.MUCH.HARDER. I actually miss the younger days. Even with all the therapy and chaos and zero time to myself, it was easier in a lot of ways. I felt more of a connection to B. and I felt like I knew how to parent him (for the most part). I used to always say that despite his diagnosis and challenges, "at least he's happy". And that kid is still with us - the one whose smile and laugh lights up a room... the happiest kid in the entire place. But there's this other side now that is explosive and angry and miserable in his own skin. When he is that kid, I don't know how to relate to him. I don't know how to help him. I can feel the stares and the judgment when we're in public and I can't do anything about it. I can't even describe how difficult it is to see him like that and to be completely helpless to make it any better. So I take a deep breath and wait for it to pass - wait to arrive in the next destination. And hope against hope that it's a place where he's happy and okay and that he knows on some level that I would do absolutely anything to fix whatever it is that is making him feel this way.

School Daze

Soooooooo... we started school. And it was what can only be described as an epic. fail. (borrowed this term from a bunch of first graders at a party this weekend).

It started out rough. I got a call the thursday before Monday's school start from B's soon-to-be teacher. She was calling to say that her leave was starting early and that her sub fell through. In a nutshell, there was no teacher assigned. Deep breath. Mini breakdown. And we keep going. We go to the open house that same night. The classroom was empty. No one there to greet us - no one to introduce B. to this new "home".

Monday came and we went to school. B was always so excited to go to this place to drop off his brother. I expected the same reaction. On the drive to school, he was silent. I kept telling him that this was his first day of school, how exciting it was. Meanwhile, I was a nervous wreck and I'm sure he felt it. When we arrived, he refused to get out of the car. Crying, pleading with me with his very limited vocabulary "no walk, no backpack, pick me up". I got him in and we made it to the first day. I think I spent more time at school that day than I did away, but we got through it. There was a sub - hired just 2 days ago and we were "lucky" to have her. B. was happy there. This we could do.

We muddled through. B. had one more rough drop-off and then he was totally on board... excited to be there and his happy, giggly self.

But it just wasn't right. Turns out that hiring a teacher 3 days before school starts does not necessarily lead to the best fit. We tried. Gave it the benefit of the doubt. This was new. It was going to be an adjustment. They were just getting to know B. and it would take time.

So I waited. I tried to believe it was going to be okay. But I kept getting the wrong message... the teacher telling me that he was getting "the cadillac of services" while other students were suffering. Random drop-ins where he was almost always alone, bouncing on a ball. I had no idea what he was doing all day. I volunteered. I popped in. I pushed and I got permission for our therapists to accompany him and train the teacher. I met with the principal. I made phone calls to the district. I talked to other parents to see if maybe it was just me. I felt so disconnected. The only communication I received said things like "happy, ate his lunch". But what was he learning? What was he doing? Who was with him?

In the midst of this, something beautiful happened. I saw B. through the eyes of other kids. Not as the little brother. Not as our kid. But as B., the 1st grader, who other kids wanted to get to know. I was shocked and overwhelmed by this response. Kids wanted to help him. They wanted to know him. They didn't view him as a freak. They were interested in how he communicated. They wanted to be with him, wanted to be his friend, wanted to learn more about him. It kept me there. It made up for the lack of communication, the fact that we were losing skills, moving backward.

And then it got worse. B. wandered off one day - unsupervised. He still had no set schedule and I still wasn't getting any communication about what he was doing. I hit the roof when I found out he was unsupervised. The teacher became the scapegoat and they fired her that day.

So we were back to square one. No teacher. No one to look after these kids. Their solution was to hire a sub who did not have a special education license until they could find the perfect fit. I made it through a couple of partial days of this. How can an untrained teacher be responsible for my mostly nonverbal son? My final straw came when I picked up my boy and he had unexplained and unnoticed blood on his clothes.

I took him out and haven't looked back.

We're at a new school now. It too was a rough start. B. FREAKED out like I've never seen and I chased him in a parking lot, in the snow, for an hour and a half trying to coax him back in.

We've only had a few days so far. Too soon to tell. But I get videos and pics about his day and his teacher cares so much that she notices things like chapped lips and runny noses. I can't fathom that he would ever have blood on his clothes there without it being noticed. He is not only cared for there but he is loved already.

We're in a better place, I think. Thank goodness B. is a resilient kiddo. He has been through so much. It makes me so sad. He is such a great, sweet kid. In fact, his classroom was filled with great, sweet kids. They were another reason I wanted to stay. They deserve more. They deserve better. I hope we have found better. I hope it's better for all of them too.

The next chapter

In just a few short days, our little B-man is starting first grade. He'll go 3 days a week for the first month and have a little bit of therapy on his off days. And then he goes full-time and the therapy fades out over the next 2 months. After 4 years of full-time therapy in our home,  it's a whole new world for him and for our family. And frankly I'm terrified. I remember when I first dropped my kiddos off at a  Friday Morning Out program. They were not quite 2 and 3 and it was the first time I formally separated from them. And I was nervous, worried and apprehensive to be away from my babies. It was tough. But we did it! Everyone was okay.

Here we are now 5 years later with more parenting experience under our belts, more of an understanding of our kiddos and in B's case, his special needs.  Not to mention we have MUCH bigger, older, less fragile little people. So this should be easier, right? I've been down this road... I eased in to part-time preschool, then half-day kindergarten and last year, the real deal: first grade with our older son. And sure it's hard for any parent to let em go as they start to gain their independence.

But this. THIS is so much harder. Because truly there is no one quite like B.  I honestly believe that. For six and a half years, he has been under my wing. I am almost always with him and if I'm not, I know exactly what he's doing and I know the people he is with. I know what challenges he might face and I know how it will be handled. I have been trained to do all of the same programs with him. I get it. And we've created an environment where we celebrate him constantly. It's a bit of a bubble, yes, but here we focus on all that he can do and every single day he has cheerleaders. His therapists are the closest thing he has to friends. They are his buddies. They know how to play with him. They can understand (most) of what he says. A lot of them have gotten very attached to my sweet little boy. He is loved. Their boundaries are different than what I expect them to be in school. He gets hugs, piggy backs, snuggles, tickles and lots of physical attention that I don't see being equal at school. How can we take that away from him? This bubble is a lot easier than when we take him out in the "real" world and see how others react to him and how different he really is. Are they going to see the real B at school? Will they appreciate how special he is?

What he doesn't get at home though is other kids. And, let's face it, reality. There is a whole world out there that he is itching to experience. That part I think he'll love. Here's a kid who gets excited to go no matter where it is: the Dr., an errand with mom, dropping his brother off at school. As the other kids would march in to battle with solemn faces at the elementary school, B would skip in with absolute glee -  singing. A couple of times last year, he cried when we left for the parking lot. On that front, he is more than ready. He has spent way too much time confined to this house. I am excited for him to get to experience what other kids his age experience.

B is ready. And I will get there. Just like 4 years ago, we are jumping in with both feet. So if you see me next week (or let's face it anytime next year), I will be the mom beaming with pride and blinking back my tears. Look out first grade - here we come!

Love/Hate

I love my child. Fiercely. In a way that I have never loved any other person in my life. He is amazing, beautiful and pure. But I hate his Autism. Hate it. I would give just about anything to just make it go away.

This may not be a popular point of view. People who have Autism want to be accepted and I've read countless articles about how we as parents should embrace the whole person, shouldn't try to change them, etc. etc. And, while I do try very hard to find the positive in B's diagnosis (there are definitely some pros), the truth of the matter is that it sucks. It has such a huge impact on our world and our family and has changed everything about it. These are just a few of things in no particular order that are on my mind lately. I should also point out that this is all from my perspective... I hate it times a million for B. I can't imagine how horribly frustrating it must be to be him - unable to communicate, in therapy 40+ hours a week, so different from other kids, without friends. How lonely he must be. Here's what keeps me up at night:

1) Sleep - literally and figuratively. It used to take B. two or 2.5 hours to fall asleep at night. Now, with the help of melatonin, he falls asleep almost instantly. And some nights, he sleeps all night. Other nights (lately pretty much every other night), he sleeps until about midnight and then he's UP. The boy throws a party in his room for as many as 6 or 7 hours at times. He very loudly sings, laughs, yells and RUNS on his bed and God knows what else. The house shakes sometimes. I guess we're lucky because he does not require us to actually get up. It's just not easy to sleep through and I usually lie awake worrying about the fact that both he and I should be sleeping. When we visit family or take a vacation, it's worse because if he doesn't sleep, nobody sleeps. Nothing puts a bigger damper on a "vacation" than 3 or 4 people (my other son blessedly sleeps through it most of the time) who are so sleep deprived, they can barely function.
2) Not being able to do things as a family. We usually have to choose whether to do something the way most families would or whether to try it with B. It's not his fault (obviously) but it is very tough to go places and do things with him. Sometimes it goes smoothly and sometimes he sits down at the base of an escalator and refuses to move. It is completely unpredictable. This is getting MUCH harder the older he gets because he's too big to pick up and I literally can not make him do things a lot of the time. In fact,  most things are getting harder instead of easier. We are supposed to be moving in the opposite direction. So we do a lot of things as a party of 3 - going out to eat, going to movies, birthday parties, playdates, even vacation sometimes. It's easier that way and yet it's so much harder to leave him behind.
3) The crying. I listen to B cry at least 5 or 6 times a day. Think about that. He is 6. How often do you have to hear your 6 year old cry? For my 7 year old, I'm thinking it's maybe once a month. And B's cries are heartbreaking because most of the time I don't know why and I can almost never make it any better. He pushes me away and tries to make the tears go away too. This is true whether he is hurt, sad, mad, sick or frustrated. I can only guess the reason and I'm pretty sure I'm wrong a lot of the time.
4) Our lifestyle that no one can truly relate to. For three and a half years, our world has revolved around ABA therapy. We have a team of 6 people (give or take) in our home 40+ hours a week. While I am grateful that we live in a place with such great resources, this way of life is not easy. It means never being alone, always having an audience while you eat, clean, parent, live. It means 10-15 hours per week of parent training and meetings. It means playdates where you have to play in a limited space so as not to disturb "teaching". It means having all of your toys taken apart and repurposed and often times missing or misplaced. It means extra coats, extra shoes, extra coffee cups and a house that can never be as clean as I want it to be. It means never having a weekend off and always opening our door at 8 a.m. ready to start the day. And it's something you have to experience to understand which can feel very isolating.
5) Communication. I remember sitting in an ECFE class when B was not yet 2 and expressing concern about him being a "late talker". And I remember saying that we felt like we didn't really know him without it. And I still feel this way today. I know B, better than anyone really, but I don't really know him. I know who he is in spite of his Autism. I know what he seems to like to do and what makes him seem happiest but I don't truly know him. I have never been able to ask him a question. He has never told me anything other than a simple 2 word request. He has never called out to me or showed me something of interest. As grateful as I am to get to experience being a parent to a "typical" child, it makes it so much clearer what we are missing. Every single word B. has ever spoken has been hard work. I remember the magic in watching my older son learn to talk, how cute his early speech was and how fast his vocabulary evolved. With B, language development & communication has only been work, confusion, frustration and despair. You don't realize how important this is until you don't have it.
6) Uncertainty about his future. This is the biggie. All of this would be a lot easier to handle if we knew how it turned out. If we knew we were doing the right things, working toward the right goals, doing what's best for B. If we knew he was going to be okay. Of course we don't know the future for any kid but we do know that they will grow up and be independent some day, however that may look. With B, we don't have that same certainty. It's terrifying and I can only allow myself to think about it once in a great while or it is just too much.

I'm not looking for a pity party. I know that you don't ever have to look very far to find someone who has it far, far worse. This is just how I feel lately and it has kept me from wanting to blog and share our day to day experiences. I'm burned out. I'm sure B. is too. It is painfully hard work.