Anxiety

Sometimes the strangest things will set off Bambam's anxiety. And I don't know why. Recently we were at a sports festival at the fun house. And Bambam was having a great weekend. He tolerated crowds much better than in the past. We attended the small concert on Friday night where he had fun dancing with the other kids and listening to the music. We spent Saturday at the pool which was very crowded and he handled it just like a pro.

Encouraged by Friday night's success, we then went to the amphitheater for Saturday's concert. He was immediately tense. It was louder, there were more people, seating was at a premium. We finally found seating on the outskirts, which was better for him anyway. 

There were several vender booths around, one being a "stuffed banana" booth. I'm not really sure what you have to do to a banana to stuff it, nor do I want to know. I like my bananas in there natural state, thank you very much. But sitting in a chair in front of this booth was a HUGE toy banana with a face including a big, red nose. Bambam was intrigued by this banana and especially the nose which he took to "tweaking". He would run over, tweek the nose, then run back to where we were sitting. He wasn't really bothering anyone, lots of kids were running around. So we simply watched him and let it go.  

After about half a dozen trips, we could see the vender say something to him. We couldn't here him. But he was smiling, didn't appear to be raising his voice or have any concerning body language so we weren't too worried about it. Bambam came back to his chair and said "don't touch nose". I'm sure he was echoing what the vendor had said to him. Which is totally fine. If every kid tweaked the banana nose, it would probably fall off. And perhaps we were a bit too lenient in letting Bambam do it over and over. Seems we are much more accepting of borderline behavior from our special needs kid than we are of our typical kids. But that is really a topic for another post. 

Anyway...its now a couple of weeks later. And Bambam is still showing signs of anxiety about the "banana man". Anywhere we go he asks "Banana man be there?" At night he asks "Banana man went home?" For whatever reason, this exchange bothered him greatly and is now a source of anxiety. And I can't really figure out why. The man was not angry or threatening. It seemed like a benign interaction. The only thing I can piece together is that he was already stressed by the crowds, noise, music and the banana man is what he is associating with that stress and anxiety. But that is just my guess. Parts of that boy are still a puzzle to me. 

Drained

Some days I just can't do it. I'm not sure why. Either I'm exhausted, or not feeling well, or stressed more than usual, or overwhelved, or simply drained, or...or...or. I'm not sure the reason matters, but somedays I just can't be the mom I should be. I want to lock myself in my bedroom and ignore the world outside. It doesn't happen very often. But once in a while I just need time to decompress, refuel, a mental health day off. Parenting a special needs child is demanding, a 24 7 job. And every once in a while I need a few hours off...or maybe a  whole day.

When Miracle Boy was 6 months old, his dad left. There is a whole long story there, but it has nothing to do with this so we'll leave it in the past. For the next 7 years, I was a single parent. And there were times when that was really tough. But honestly, it was nothing compared to parenting a special needs child. I simply cannot imagine being a single parent of a special needs child. I'm so thankful for all the support I have.

Even with all the great support I have, there are some days I just can't do it. I can't repeat my part of the same script for the 82nd time that day, or watch the same airplane video over and over and over and over.... Or, change the pull ups on my 7 year old. Some days I just need a break.

And I try not to feel too guilty for it.

Humanity

I refuse to give up my belief that people want to do the right thing; that at the heart of it they basically want to do and be the best that they can. I'm not naive enough to believe this is true of every single person, I know there are exceptions. But as a whole, I believe this to be true. I believe in humanity

I see examples of it every day. I see it in the scruffy man who paid the difference for the little girl who didn't have enough money. I see it in the cashier at the big box store who lifted the big turkey out of the elderly ladies cart to scan it and then put it back in for her and then called another employee to help her to her car. At a big box store that doesn't provide any help, at all, for anything. I see it when 3 cars stop for the stranded lady on the side of the road to see if they can help her. I see it in the gentleman who opened the door for me today. I see it in the smiles of the people I pass.

And I see it many times a day in Bambam's activities. I see it in Bambam's swim teacher who goes above and beyond to connect with him and keep him engaged. Who patiently replies "goodbye" 18 times as Bambam says this every 10 seconds as we are getting ready to leave. I see it in Bambam's teachers and classmates who are beyond accepting and caring. I see it at the pool where they do not make Bambam where the paper wrist band as it dives him nuts. I see it at the Fun House airport where they allow Bambam out on the tarmac to see the planes. I see it in his soccer coach, who with no real experience with autism made appropriate accommodations for him. Who was supportive and understanding and who celebrated his little victories as much as we did.

But even more importantly, I see it in strangers who we pass briefly. People who don't know him and don't really understand his quirks. Like the lady at the groccery store in front of us who asks if we want to go first so we don't have to wait so long. Or the pharmacy clerk who engages him in conversation and seems completely comfortable with the fact that he is stuck on the same thought. Or the man at the stables who graciously took us back to see the horses in the barns, even though the barns were closed.

Don't get me wrong. Not all of our outings are all roses and sunshine. One particular example comes to mind. Last year I took all three boys up to the ski lodge. The older boys were snowboarding and I thought Bambam would enjoy a day playing in the snow. He loves the snow. Boy was I wrong. It was a new place, his brothers went off on the mountain without him, it was noisy and chaotic in the lodge and Bambam was beside himself. By the time I got him into the bathroom to put his snow clothes on he was in full blown meltdown mode. He was screaming and flailing all about as I was trying to change him when the janitor approached us and said to him "You are really too old to be acting this way."

Being on my last nerve, I lost it. It is not my proudest moment. My response to her was "Even though he looks 8, he's only 5. And he's autistic. So, when you've raised a special needs child, then you can comment on how I'm raising mine." At which point I started crying right along with Bambam. It was a low point for me. We walked off around the corner to try and put his boots on.

But you know what? Before we got calmed down and both boots on, she came back. She gently placed her hand on my shoulder and said, "I'm so sorry. It was really none of my business and I shouldn't have said anything. Is there anything I can do to help?" And I started crying all over again.

In the midst of all the terrible news stories we've been hearing, I still refuse to give up my belief that people want to do the right thing; that at the heart of it they basically want to do and be the best that they can. I choose to believe in humanity.

A Fraud

Usually I feel like an open book. I don't really hide much. My life is what it is and if you are willing to listen, I will share it with you. But, lately I've been feeling like a fraud.

I can not tell you how often I hear the words "you are such a great parent" or "I don't know how you do it" or "I could never do what you do" or "Your kids are so lucky to have you" or my favorite (which came from the LRC teacher at school) "Bambam hit the jackpot when he got you for parents". Really??? I don't feel like any of this is true. And if this is the picture I present to you, then I'm a fraud. Because here is what my days are really like:

I barely even say hi to my teenagers as they get themselved up, ready, and out the door to school. Our conversations in the morning exist of "bye mom, we're leaving" answered by me with "have a good day, love you guys". That's it. Most days I don't even know what they are wearing as I'm in my bedroom getting ready when they walk out the door and the words above are yelled down to the front door. Great parenting? I think not.

Bambam watches Curious George and The Cat in the Hat every morning so I can get his breakfast made, our lunches done and get myself ready before getting him ready for school. Seriously, TV first thing in the morning, every morning. And, I don't have time in the mornings to patiently wait and work with him on dressing himself. I know more than anyone that we are supposed to work on adaptive skills. I just don't have time in the mornings so I still dress him at 7 years old. Some days we are still late for school. Not exactly parent of the year.

My teenagers go either straight to their sports practice or to the athletic club from school. Often they are not home by dinner time so we eat in shifts. Sitting down for a family dinner is a rarity at our house. And Bambam doesn't really eat dinner, it's just not his thing. So he sits in the family room doing his iPad while Mr. Fixit and I eat dinner. Now that's good parenting.

The dinner dishes don't always get done after dinner. In fact, some days they don't get done until I get home from work the next day. And my house is not always dusted, vaccumed, swept and mopped. The laundry piles up. I will never win the Betty Homemaker Award.

Miracle Boy has been on the varsity golf team every year in high school. I have never yet watched a golf tournament. In 3 years, I've never seen him play. Granted, they play during the week when I'm either at work or have Bambam with me. And its not convenient. But a great parent would make it happen.

I do not get to all the things I'm supposed to work on with Bambam every day. The fine motor work, gross motor work, sensory diet, academic work, social skills, play dates, adaptive skills, speech and language skills, theraputic listening, brushing, etc. Some days we don't even read for 10 minutes. Some days I fail him miserably.

I am not a great parent. I'm just a parent, just like all the other parents out there. I really want to be a good parent. But life is not perfect. It's messy and chaotic and the days are shorter than necessary. I often make mistakes and fall short. I'm impatient, I yell, I make snap decisions I regret later. And when people tell me what a great parent I am or how lucky my kids are, I feel like a fraud.

More Evaluations

On Monday Bambam goes in for another round of evaluations and tests. 4 hours of testing with a neuro-psychologist. A new Doctor that he doesn't know. In an unfamiliar setting. In an environment where he knows he's being evaluated and wants to do things "right". It is a familiar formula which always equals a very anxiety riddled little boy. I wish I could do it for him. 

I do not like being the one to take him, exposing him to what is for a him a hostile environment, a painful experience. As parents we want to protect our children. Keep them from pain, anxiety, fear. But sometimes it cannot be helped. I know it is for the greater good. Making sure we are on the right track, providing him with the services and accommodations needed to reach his full potential. But that won't make Monday any easier. Sometimes being a parent is hard.

The Fortunate One

We are so very fortunate. We are one of the lucky ones. Yes, we live with autism day in and day out. And yes, it can be stressful and overwhelming at times. But we have amazing support. From family, from friends, from teachers and aides and neighbors. The list is long. And every day I'm thankful for each and every one of these people. The teachers who are endlessly patient, the aides who are loving and caring, the doctors who don't dismiss us and listen when we say there is an issue, the friends who include us in their gatherings, their kids who take Bambam as he is and do their best to engage him in their play, grandparents who will babysit anytime...

But, today, at this moment what I'm most thankful for is my amazing sister. I could never do this without her. She is my sounding board, my support, my cheerleader, my adviser. When I call her upset that Bambam can't do the activity the other kids at school were doing, she listens. And then she reminds me what he can do. And that he will do the other things too, in his own time. When I'm on my last nerve, she invites me to her house for an afternoon of "sister time". And if the stars line up and the gods are smiling, maybe, just maybe an overnight sister trip. She sends me mismatched socks in the mail with a picture of the other mismatched socks on her own feet. The note says: When having a very bad day, put on the sister socks and know that I'm standing with you in solidarity. What 49 year old woman does that? One who sees the fear, anxiety, pain, anguish, the overwhelming feelings that can sometimes accompany raising a child with autism. One who knows and understands that mama occasionally needs a break, or she might break. One who loves me unconditionally, no matter what, period. One who's been watching out for me my whole life. I am truly the fortunate one.

The Dentist, Round 2

After school started, it was finally my turn to go to the dentist. I haven't been in a "while". But with Bambam now in first grade, I'm hoping to have a little time to get some of these much neglected items done.

The first thing the dentist says (after no decay, yeah) is "I see you grind your teeth". I do not grind my teeth. He insists he sees wear patterns consistent with grinding. I insist I do not grind my teeth, never have. He is smiling and nodding his head. Its irritating. Then he asks if I have any extra stress in my life. At which point I laugh. Out loud. Almost hysterically. I think I scared him. He asks if I can reduce some of the stress. Am I seeing a therapist or my dentist? Not unless I get rid of the children or my parents. It is what it is and I deal the stress the best I can. And most days I think I'm doing a pretty good job of it.

He asks that I pay attention to what I'm doing when I feel the most stressed. I love my dentist, he's a great guy. But really, what I don't need is someone else telling me I'm too stressed, I need to slow down, take care of myself, blah, blah, blah. So I assure him I will, but I DO NOT GRIND MY TEETH. And off I run to pick up Bambam early for lunch so he can avoid the fire drill.

Skip to later that afternoon when Bambam is resisting getting changed and the whole house is smelling like poop. I'm trying to get him into the bathroom when I notice that (I'll be damned) I am CLENCHING MY TEETH! In my attempt to not yell, I've clamped my mouth shut. Hard. Huh. Stupid dentist. Now I have to tell him he was right, which he already knew.

How could I have not noticed this? Now I'm sure I've been doing it for several years.One more thing to stress about...