Fairness

"Fairness does not mean everyone gets the same thing. It means everyone gets what they need."

This is never more evident than in a household with a special needs child. Bambam was born when the older boys were 10 and 10 1/2. At that time The Quiet One was not living with us. So Miracle Boy felt the brunt of the changes. He had to learn real fast that fair does not mean equal.There were many days when he had to "fend for himself" in one manner or another because we were tied up with Bambam. In some ways he had to grow up faster than their peers. And sometimes it makes me sad.

Gone were the days of big family vacations. Gone were the weekend skiing trips. For several years my ability to volunteer at his school or athletic events was not a possibility. I even began missing some of his events. I had never missed an event before. He had longed for years for a sibling that lived in our household, used to cry for The Quiet One to move here. Be careful what you ask for, he got way more than he bargained for. This was not what any of us had planned.

The fact is, we hadn't planned any of it. Bambam was a bonus. So while we were trying to adjust to the idea of a third child, we got the additional shock that he was a "difficult baby". Which eventually lead to autism and a host of comorbid diagnoses. And there is no way to make things equal in a house with typical and special needs children. And sometimes even to determine what they all "need".

Bambam's needs are fairly evident: He needs therapies (OT, PT, SLP), social communication classes, adaptive activities, many doctor appointments, etc. I pick him up from school an hour early every day and take him to one of his appointments or activities. I work with him at home. We rarely leave him unsupervised (only if he's in the next room and we can hear him and check on him easily). He commands the bulk of our time and financial resources.

The older boys are mostly understanding. Although we sometimes get comments. For example, its been a long standing rule in our house that we do not buy our kids the latest electronic gadgets. When Miralce Boy got his first iPod, he paid half of it and we paid the other half as his birthday present. Since then, he has bought his own technology. But when Bambam was 5, we got him an iPad. One of the boys made a comment about Bambam getting an iPad when they don't have one. My response was "If you would like to change places with him, be a 5 year old autistic kid who struggles every day to navigate a world that is hostile but get an iPad; I'm sure he would love to be a 15 year old kid with lots of friends, a job, doing well in school, a girlfriend, etc. but give up the iPad" We've never hear another word about what Bambam has. I really think they get it and they want their baby brother to have all the help he needs.

But, there are still days I'm left to wonder, are the older boys getting what they need? I no longer worry about fairness, life simply is not fair. But, how much are we short changing these 2 other kids? There are times it feels like we are forced to pick which child to help. Do we funnel all of our resources into Bambam to help him learn life skills he so desperately needs? Or do we funnel some of them into Miracle Boy's college tuition to help him grow and learn and be the best that he can be? Miracle Boy is capable, he's bright and personable and has great potential. He's done well in school and has lofty goals. I feel like he's earned a reward of some assistance with tuition. But is this a need? How do I choose which child to help?  

I'm Hungy

Bambam came into my room this morning and said "I'm hungy". This is huge. I mean really huge.

Bambam struggles with feelings and emotions. That is probably an obvious statement. Most kids with an ASD struggle with these things. He never says I'm cold, I'm tired, I'm hungry, I'm sad, I'm excited or any of those statements. Don't get me wrong, he's verbal enough to get his needs met. But instead of saying I'm tired, he'll say its bed time. Or instead of saying I'm hungry, he says I need snack. And as I talked about in my last blog, he never, ever says I'm hurt.

We've been working on this for months, possibly years. Each time he says to one of us that he needs a snack we ask him if he's hungry. We try to get him to repeat the phrase "I'm hungry, I need a snack". When we eat we pointedly say to him "I'm hungry, I need breakfast." Over and over and over again. And we've gone months with no indication that he gets it. Until this morning.

My kid came and told me "I'm hungy". Unprompted, unscripted, all on his own. And those are the two most beautiful words I will hear all day, possibly all month.

I OK

As I was getting ready this morning, Bambam came into my room and said, "I OK". This is a clear sign that something has happened. So I start to question him.

Me: What happened?

Bambam: It slippy

Me: Did you fall down?

Bambam: Yessss

Me: Did you get hurt?

Bambam: Yesssss

Me: Where did you get hurt?

Bambam: On da ground.

(I should be used to this literal kid by now. New question.)

Me: Where does your body hurt?

Bambam: My foot. Kiss it. 

So I did. And that was the end of it for Bambam. But not for me. 

Like many kids with an ASD, Bambam has sensory processing issues. He appears to be hyposensitive to pain and temperature. I've seen him hit his head on the corner of a cabinet, putting a small hole in his head with blood running down his face and he not even cry. It is not uncommon for him to have scapes and bruises and us have no idea how he got them. Once, after noticing that he was limping we looked at his foot to see his ankle swollen to double its normal size. Thankfully it was not broken. But this all freaks me out just a little. 

Clearly his body reacts to pain, he was limping and that's why we looked at his foot. But he doesn't express anything, or at least very little, about it. He rarely says "ow". He knows he got hurt, he came and told me "I OK". But he doesn't cry and he never complains about being in pain. Ever. Not even when he has 104 degree fever or is vomiting for the 4th time in an hour. Is this just because he doesn't know how to express the pain? Or does it really not register as pain? I don't know. Nor do I know if it matters. The fact is that I remain in fear that some day he will have a broken bone and we won't discover it for a week.

Just Ask

Mr. Fixit and I spent an hour last night looking for the TV remote. At about 6:30 tonight, Bambam asked if he could watch some of "my TV". That means either PBS or Disney channel. Since PBS was well past kids programming, Mr. Fixit put the Disney channel on and disappeared into the office. About 7:00, Bambam decided to go downstairs with "brother" and I couldn't find the remote.

I looked everywhere: in the basket where it belongs, on the side table, on the coffee tabel, on the counter in the kitchen, on the breakfast table, under the coffee table, on the couch, under the blanket and pillows, in the couch cushions. No luck. At which point I went into the office and very irritated asked Mr. Fixit where put the darn thing. His response, "I haven't been in the family room in an hour, I have no idea where it is." But you were the last one to use it I countered. So into the family room he follows me to join the search.

In the mean time, it's now 8:00 so I go get Bambam ready for bed. And I hear Mr. Fixit grumbling because he can't find the remote either. At one point he says rather sarcastically that maybe Bambam used it. On a whim I asked Bambam if he knows where the remote is. And he says, "Yesss, I put away." You put it away? Where? Unner da couch. And then he marches right over the the end of the couch, leans down, and pulls the remote out from under it. Well, huh.

Who would have thought to ask him? Seriously, its a crap shoot when you ask Bambam a question if you are actually going to get an answer that is even on topic. And as far as I know, this child has never really paid any attention to the remote. He doesn't play with it or attempt to change the chanels or anything. So I never really thought to ask him.

I can only imagine what was going on inside his little head as he watched us searching for the remote. That stinker knew where it was the whole time. All we had to do was just ask him.

Lesson learned: Never underestimate my autistic 7 year old, and he apparently has a wicked sense of humor.

Brother

Bambam adores his brothers. Both of them. But he has a special bond with Miracle Boy. I'm sure this is because Miracle Boy has always lived with Bambam. He's always been there, a constant. He loves The Quiet One just as much. But in times of stress, he wants Miracle Boy.

Other than Mr. Fixit or me, Miracle Boy is the only one that can put Bambam to bed. When he needs help going potty or needs changed he turns to Miracle Boy. (Actually me if I'm home; Miracle Boy is a close 2nd even before Mr. Fixit.) 

He follows Miracle Boy around the house, wants to hang out with him in the basement, sit next to him at dinner and in the car, mimics him. And he calls him "Brother". It is the sweetest thing. He occasionally refers to him by name; but most of the time he simply calls him "Brother". He loves it when Miracle Boy babysits him: "Brother stay with me?" with a huge grin on his face. 

And for the most part, Miracle Boy is up to the challenge. (He is after all a teenager, so sometimes he squawks about it) On school holidays, he frequently acts as Bambam's care provider so I can work. He stays with him so Mr. Fixit and I can have the occasional date night. He is an integral part of what makes our household work.

So I should not have been surprised this past weekend. We were at the Fun House and went sledding for the first time this season. As expected, Bambam was hesitant, something outside the norm. Nothing Mr. Fixit said could convince Bambam to go down the hill with him. So Bambam watched as everyone else went on a run. And he still refused when Mr. Fixit tried to get him to go along the next time. That is until Miracle Boy asked if he wanted to come sledding with him. With that, he took off in a run with a huge grin and went sledding with "Brother".

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.