Not your average BJ

Well, now that I have your attention….I have song lyrics in my head all of the time. I think they call that ear worms. Not a great visual but I get it. I have always had Billy Joel’s Summer, Highland Falls in my head. “For we are always what our situations hand us, it’s either sadness or euphoria” WOW that really haunts me. It touches a nerve because I think I hover between those two emotions very often. It is hard for me to function too well in a state of chill. Just ask Earl, he’ll tell you.

I pretty much am either happy with things or very distraught. I have learned how to manage this better over the years, some combination of drawing on experience, living with Earl, and my work. My boss is extremely even-tempered. It sets a great tone for the office and for me. Last week something came up that I might have gotten really upset about at work. I was able to take a deep breath and reel myself in. That is huge progress. Lexapro doesn’t hurt either!

I feel this same way about autism. I am either really thrilled with how Bryan is doing and his progress or I am ill at what the future may or may not hold for him or us. This week should be a good week. He did really well at speech and OT this weekend, they are working on making inferences. It is just not a natural or intuitive thing for Bryan. I have found that drills or repetition are the best way for him to learn something. Other things, like math, are a snap, except word problems where there is too much language. Another autism lesson we have learned is that you can never assume Bryan knows the definition of a word. If you use a word that another kid might get the gist of it in the context of a sentence; that typically does not happen with Bryan. We have a kids dictionary and he looks up words all of the time. Vocabulary is the key to language and he can’t just pick it up like you or I do.

I have been fighting a lot of emotions about sleepaway camp. Bryan is going for 7 weeks, which is a long time. People judge us, I can hear it in their tone and their comments. Don’t judge us, we know our kid. We know that he will mature, he will learn, and he will develop relationships. We feel it is right for our family, that we want to give him the tools of independence he cannot get at home. Bryan went to sleepaway for two years already, 10 days and 3 weeks and we still keep in touch with the one pretty good friend that he made there. We skyped last week. The boy has aspergers and lives outside Atlanta. Although they don’t have in-depth conversations there is a connection and they were excited to see each other. But, we will miss him so much. And Jason too who will be away for 6 weeks. Jason needs to be saturated with typical kids his own age. He needs to mature as well. When you are responsible for yourself and your things it really does make a huge difference. Don’t expect too much blogging this summer!! Earl and I are going to clean and organize this house, go away for a few days and just sleep. Everyone says to us “you need a break” as if Bryan is some sort of burden to us. To me, break implies something is broken and I don’t like to think of things in that way. I cringe when people say it that way. It makes me feel guilty because I don’t want him or Jason to feel like they are getting sent away but rather we want them to feel as if they are getting a huge privilege. In any event, it is my hangup because a little time for us to reconnect and catch our breath is something to look forward to and we are.

Joker!Joker!Joker!

I play Family Feud on my iPad. I play with other folks and it’s a fun way to connect. However, the company that created or manages the app sent out an invite to play their new app, Are you smarter than a fifth grader? Well apparently I am since the stupid app invites you by sending this note: Here is two coins to play Are you smarter than a fifth grader. Really? I can tell the app creator isn’t, so why bother? It’s making me reconsider my Family Feud game too.

Amazingly enough there is very little that has to do with Bryan or autism that is at issue right now. The biggest behavioral challenge that Bryan is presenting is nonstop inappropriate laughter. It’s sort of wacky and creepy at the same time. If Jason gets upset, hurt, angry, basically anything but happy, Bryan will laugh right in his face nonstop. Of course that makes Jason angrier, more upset, etc. and Bryan laughs more. Then Jason hits Bryan or lashes out and blah blah blah….Last night I decided to take them for a walk: 2 kids, one scooter and the dog. We literally got about 20 feet from the front door and Jason’s scooter hit a bump, he fell and got scraped up. Nothing major but Jason cried a little and Bryan was laughing and laughing. Jason went home and Bryan and Riggs and I walked on. More laughing but I wasn’t the one who fell off the scooter so I handled it. Apparently this is happening at school too.

Jason’s ultimate quest for fairness serves as a reality check for us. At times we do “let Bryan get away with things” that we don’t let Jason. Jason understands the difference and sometimes when we gently say to him that Bryan has autism and can’t help it, he says “I don’t care”. How do you level the playing field on that one?I have heard that lots of typical kids are resentful of their special needs siblings for the attention they get and the “special privileges”. We try to even it up where we can. We ask Bryan to feed the dog. We showed him how to do it and he does it. Our steps accumulate dog hair and need to be vacuumed/dust busted every other day. We taught Bryan how to do it. Now when Jason complains about feeding the dog, etc. we can say “well Bryan did it last time”. If we ask Bryan to do either thing he just does it. Gotta love that!! Rules!!!!!! It seems as if we are getting to the point where Bryan will become the easier child in many ways. I took Jason to the dermatologist last week to treat a lovely wart he has on the bottom of his foot. They touched it and he screamed and cried like he was being tortured. He also had to go back to the orthodontist to get his palate expander put back in. (it had been removed due to infection from popcorn lodged in it and rubbing against his gums). He did a pretty good job at this but after each of these appts he wanted to go to buy Legos. Apparently Legos have some secret healing power I was not aware of. Just so you know, I’m not that easy, no Legos were purchased as a reward for doing what you are supposed to do anyway. Bryan went to get a tooth pulled today and there was nothing. He just went, they numbed him up, took it out and he went to school. Not a peep!

The disparity kind of makes me wonder how people come up with the labels they do for autism. Is your son high functioning? I get this question all of the time. Do you ask someone who has a typical kid, hey is your kid smart? Does your kid function well? You wouldn’t and so why do we do this for autism? What scale is this on? What the hell does this mean? I don’t think people are honest either. Most people say their kid is high functioning, so how do you know? Bryan is high functioning in that he can shower, get ready, pick out clothes, brush his teeth, make his bed, take something for breakfast like a bowl of cereal and milk. Can you have an age appropriate conversation with him? No. Does he know his name, address, parents names and phone numbers? Yes. Who decides? He goes to sleepaway camp and must take care of himself. To me that is one form of high functioning. Verbal communication, well that’s another whole story. Who gives a crap anyway. He is on the spectrum and you can meet him and decide for yourself. All we know is that somewhere between the silly and crazy laughing is an emerging boy. He understands all and is so loving and eager to learn.

Mother of all days…

Everyone knows tomorrow is Mother’s Day. It’s a day to let your mom know you love her and appreciate her. One of those nice made up days that you must respect and deal with or you’re a shit. I love my Mom, she knows it, but I am perfectly happy spending a day, any day, letting her know she is not taken for granted.

As far as my own motherhood goes, I still, after 12 plus years of being a mom, thinks it is so truly amazing to be a mom. The unconditional love and trust of your child electrifies your life like no other thing on this planet. When you hear “Mom, I love you” from a precious gift that you gave birth to, you are whole in a way you could never have even imagined. Funny thing is that I didn’t really like kids all that much before I had them. I think I was afraid they would be too noisy or it would be too much of a commitment. How crazy is that? Stinking crazy!!! Now I embrace motherhood like it’s a girl scout badge that I have earned from hard work and determination. Let me tell you how mommy-ish I am, I have even considered getting a mini-van, the ultimate symbol of a mom. The problem is cranking the dead tunes or listening to Howard Stern in my mini-van, so counter intuitive.

Some years we spent going to the beach, or brunch or just letting me sleep in for a lazy day. Other years I met some friends and we had the “going out and drinking” kind of mother’s day. They are all good because at the end of the day, you tuck those little ones, or not so little ones, into their bed. I love to check on my boys when they are sleeping and touch them just to make sure they are breathing and ok, like when they were infants.  I love just to hear them breathing and smell their yumminess. Funny how some of the worst and best part of being a Mom are the smells!!!

This year we are going to be very low-key. Dinner out with all of the family and perhaps some small gifts, just tokens of appreciation and thoughtfulness. Earl is playing softball in the morning. Although all of the wives/moms protested, it still remains a man’s world. Payback on father’s day!!!

Having a special needs child does challenge you in a way that other mom’s do not experience. I often see mom’s of typical kids and have thought, damn they have it easy. Everyone has issues and problems and all kids challenge you but it is different. I have one of each so I see what the difference is. Jason is all about “watch me’, “see me”, that is what he is supposed to do. I am proud and watch him gracefully navigate social situations, school and life. Bryan makes me earn it; I must be on my toes, advocate, think long and short-term, and innovate. I must dig deep to my core and provide love and patience and respect when I’ve got nothing left to give. But the triumphs, well they are sweeter than words.

 

If my plate is a platter, where’s the party?

I joked with one of my friends that my plate is a platter. Her response:  a platter means someone is having a party, so that’s a good thing. I love that glass half full attitude. I promptly told her I was going to steal that for my blog, and well, I kept my word.

I am all over the place these days; I feel like a triage nurse just making sure all of the patients survive.

My work is out of control right now and we have never been this busy. Busy=job security, keep it coming!! I know it’s really busy when I wake up in the middle of the night with anxiety, hoping I didn’t forget to do something. Damn subconscious.

Crazy week too. Art fair at school, they wanted to extort us, I mean ask us to pay $25 per kid for the kid’s painted picture in a frame. I think that is taking “priceless” a little too far. So, we will wait until it gets sent home from the art teacher and frame it ourselves! Bryan does not do well going back to school at night. I don’t know if it’s some sort of fear that he will have to stay there, or that he’s tired or that there may be social demands on him that he is not up to. He yells and always asks to go home. He does love to see people so I think at times he just cannot get out of his own way. It is seriously not fun for Jason or me, however, and as always results in a lot of weird stares from people and bitch stares back from me. Don’t mess with me and don’t look at my kid; I will take you out. Going postal is always just below the surface.  Inevitably, Jason wants to stay and participate in whatever is going on at school and Bryan just wants to leave. I am always amazed that Jason handles this so well; I think if I were a 9-year-old it might embarrass me if my brother behaved that way. Although Bryan cannot always help his behavior and there is nothing to truly be embarrassed about it, I still feel it is very loving and accepting of Jason that he doesn’t get embarrassed. I guess if that’s all you know, you just deal with it. Good lesson for everyone.

Last night we went to an open school night at the middle school we hope that Bryan will attend. We did not get to do anything really, Bryan was so emotional. Some combo of hormones, OCD, autism, anxiety. There’s a party for you! We didn’t stay long but at least he got to see the physical layout and he can process it a little better. The stress on Earl and me  is incredible at times. We both are under a lot pressure right now and exhaustion plus night-time commitments plus Bryan’s OCD and perseveration is not what I would call a recipe for happiness. We will overcome though!!

I found out from a friend that another person I know received an autism diagnosis for their child. My friend, the middle person, asked me some questions and I offered what info I could not knowing the circumstances. Every time this happens my heart breaks a little bit.  I am in this and I don’t know what to say, how ironic. I just feel like it must be the most overwhelming feeling. We didn’t have the tools or info that they do today so when the doctor said PDD to us, we just didn’t know what we were up against. It also brings me back to my own feelings of how our journey with Bryan  has unfolded and that isn’t always a pretty stroll down memory lane. A new work colleague came to a meeting in my office recently. My office, like my life, has lots of autism “stuff” in it. He did not ask me anything or say anything. Yesterday we were meeting again and he said to me, “hey I have something for you” and proceeded to give me a piece of USA today-Life Section with an article about a family with autism and how they cope. The article could have been good or bad, it doesn’t matter. Can you imagine someone being so thoughtful? Talk about getting on my good side! It is always the little things that tear me down and build me up.

Can you picture that?

Bryan totally loves the Muppets. Admittedly I do think Miss Piggy is the jammy jam. I love how she changes her hair and outfits all of the time and all her “oh Kermie”s. He particularly loves the Electric Mayhem and literally stole Erwin’s Electric Mayhem t-shirt out of his closet about 2 years ago. He can name the characters and loves to sing the songs. Bryan is very musical; he doesn’t have a loud singing voice but he always captures the tune and melody.  If you know our family, that is a miracle!

We got a call last week from our Autism Coach.  She wants to know if it would be ok to honor Bryan at the 5th grade moving up ceremony. Moving up is 2012 speak for graduation. I get it’s moving up from grade to grade but when they are leaving the school because it does not go any higher, isn’t that really graduation?  Sorry for the rambling… She is so terrific; she wanted to check with us to see if we would be ok if she talked about him, his journey and to give him an award. Can anyone say “get me a goddamn box of tissues???” Well here was my response:

1. Um, yes!!

2. WOW

3. How many people can we invite and can this be videotaped? (just so you know, if you are reading this blog, you are invited)

Bryan can truly amaze us at times. I cannot imagine what she will say or what he will think. I do always struggle with getting inside of his head and wondering what he knows, understands, processes.  But… I do know that if people wonder if their special needs kids have the ability to do great things, they can. Stop wondering and start believing.  He touches peoples lives and we are grateful for that.

Jason was selected to be a PlayPal at school. PlayPals are typical kids in upper grades (3 through 5) that are paired up with a child on the spectrum to help them on the playground, with reading, or whatever social interaction may be challenging for them. Bryan has 2 PlayPals and they help him on the playground. It is natural for kids to approach each other on the playground to play. We don’t even think about it. But for a child on the spectrum, they need the “script” or guidance or modeling. Really most things that a typical child picks up by reading cues, verbal and nonverbal,  are the ultimate challenge for a child on the spectrum.  It’s a great program and we are fortunate. Jason is the quintessential PlayPal. He is a PlayPal basically every day. He is excited and proud of himself. There is only a short time left in the school year but nonetheless he can and will make a difference for another kid on the spectrum.