Sugar, yes please.

There is truly nothing greater in this world than the joy your child brings to you. While the last week or so has brought some of the greatest highs, I have experienced some significant lows too. I try to keep the highs front and center, but I often find myself shaking my head at some of the nonsense in my life and some of the negativity that tries to latch onto me. One of the challenges I face, as do many others, is juggling all of my responsibilities. I get a lot of “you have a lot on your plate” to which I reply, “my plate is a platter!!” but hey it’s my plate so whatever. Everyone does this, so it’s not in any way unique to me, however, I not only want to and have to handle them, I want to do them well and with a good, positive attitude. I function well at a high activity rate, but every now and then one thing pushes way too far and it’s the straw that broke the camel’s back. I am reminded of that silly board game that was around when I was a kid where you literally kept piling straws in a plastic camel’s back and then when there was one too many and that damn camel fell, you lost the game. ha! Sometimes I feel like that camel (ok, not a great visual) and I’m daring people to put more on. So what happens when there is one too many…? I don’t have the luxury of hiding out from my responsibilities. I do try to do as many fun things as possible as a way counterbalance many of these difficult or upsetting things. Work hard/play hard may be a cliche but for me, it fits. I just don’t want to miss anything!! straw

So yesterday I was at maximum capacity for BS, nonsense, stress, aggravation, responsibilities, etc. A few things have been brewing and a few things have been tugging at me and I was just feeling a melt down come on. Not exactly a meltdown, more of an implosion where a good cry/sob was imminent. One of those times where I wish I had the ability to go home, get into bed, under the covers, and just get into the fetal position for a few days.  No such luck! I had to take the boys to the orthodontist in the middle of the day. Not the best timing, but what can you do; they were taking them at the same time so that helps but after being out of the office for two days last week, I was feeling very work overwhelmed.  They decided to take Bryan’s braces off and while that is exciting and great, anything with Bryan has to be choreographed properly. To make a long story short, we needed some lasering of his gums and some bonding which were all supposed to happen at that appointment when the braces came off. It was not scheduled properly by the orthodontist and that was about one straw too many for me. You see Bryan’s teeth had shifted previously after the braces came off because he would not wear his retainer and removed the permanent retainers multiple times. He had to get his braces put back on so you see this was sort of big deal. While we were trying to work it out, Bryan was so excited to get his braces off. The orthodontist’s office is an open room with many treatment chairs where lots of assistants are working on kids, in other words, a room full of about 12 people plus the two orthodontists who come in and out. Bryan was so elated, he grabbed Jason and me and the assistant and made us put our hands in the middle (as if we were a sports team getting ready to play) and he said “1, 2,3, braces off,  yay!!” We all lifted our arms up in unison. The whole office erupted in laughter and cheers and then I was struggling to hold back the love cry. He completely leveled me. How could I possibly feel anything but joy?? Get a grip Jane. Jason and I giggled and smiled and the whole thing was met with hugs and high fives. Everyone in the office, including other patients, assistants, office staff, doctors, etc. were laughing and smiling. After that Bryan had to have several injections in his palate for the laser and impressions and bonding. He sat like a champ. No anxiety, no squirming, nothing. If you know autism you know one thing: what is easy is hard, what is hard is easy. He never moved for a minute and sat there for his work for an  hour and a half. The minute he got up the anxiety kicked back in and he wanted to know about when he would get picked up from camp in August.

For me, a great reminder that no matter how bad you feel, no matter what is getting you down, that one drop of sugar can make everything sweeter.

You can. End of Story.

endofstoryWhile the focus of this blog entry is on Bryan, the title could apply to Bryan, me and basically anyone facing a goal. Bryan is 17 and is an extremely capable young man. I don’t say this flippantly or casually because there is absolutely nothing casual or inadvertent about where he is today.

About 13 or 14 years ago, when we first learned of speech and language delays, among other delays, before we got the big “A” diagnosis, we went to meet a speech therapist who was considered a guru in dealing with “these kids” and our pediatrician arranged an appointment. Bryan and I went and she was a very business like specialist who asked me a bunch of questions about him and his development. For the next hour, no joke, one hour, she sat on the floor with Bryan and played with him, using Sesame Street character figurines and a playset with slides and activities for the figurines. I sat in the room on the chair holding my breath and and trying not to cry or vomit-again, no joke. What would this woman say after this hour? What was she trying to get at? It was all so unfamiliar to me and terrifying. It was not the first, but it was the beginning for sure, of what would become a long road for Bryan, a long road for our family, and a personal journey for me. After the hour she let me know exactly what she thought. I can remember being in my skin at this appointment as if it was an hour ago. She said here’s what I think: “He’s in there. You will need a tremendous amount of therapy over many years. There is no magic pill; you cannot throw money at this to make it go away. You also need to use his strengths when getting him into schools and programs. You are lucky, he is a very handsome and engaging little boy. If you go to a program, take a photo with you, but don’t take him. You don’t want anyone judging him by his behavior at one meeting.” I listened intently as if the Dalai Lama was imparting the key to life to me. Since this was a long time ago and still very distinct, you know this had a huge impression on me. I feel emotional just typing this and remembering how I felt in the car trying to process all of this info. I won’t take you through the timeline because many of you know it, but it was solid, no bullshit type of advice, including the part about how he looks. It was a crash course in “put your big girl pants on lady, because this journey is not for the weak and you better realize in short order that if you don’t get cracking and face up to reality, you’re screwed”. That’s Janespeak for what went down and for the talk I had and continue to have with myself 14 years later. I am quite fortunate, as is Bryan, that his father was always and is always on board with whatever is best for Bryan, and literally has no ego when it comes to him. Men often shy away from these kids and their issues which can make things worse; but that was never the issue. We were and are still of the same mind when it comes to Bryan: You can. End of Story.

It would be so nice to say that Bryan is now a Phd student at Harvard and has outgrown autism and everything is perfect and rosy. That is certainly not the case, nor the goal. However, the goal has always been and will continue to be that if you work hard and set your mind to something, goals are not only achievable but are inevitable. Kudos are offered up to Bryan and his desire to do well, to learn and to please. What the general public cannot or does not understand is that special needs kids work so damn hard at everything and every moment and task is evaluated. “Gee Bryan was great at lunch last week.” Oh yeah, well how was Jason? I know it’s unfair but imagine your life was one big report card. It’s tough. The one thing I do know is that the most important thing we can give to Bryan is his sense of pride, his sense that he can do and be whatever he wants, without regard to a timeline. And for the record, autism still sucks. Yes, I am grateful for the life lessons, yes I am grateful for Bryan growing up in slow motion and still allowing me to kiss him and hold hands in public, and yes I am grateful for the love and support from some of the most unlikely people. The anxiety that Bryan experiences as “his autism” still thwarts some of his progress and still tests even the most patient of people. His impulse control issues and his language delays still impact him and us regularly. While he feels complex emotions which can be learned from his behavior and some language, his expressive self is still highly challenged. So while I suppose I can and do appreciate the progress, the lesson must always stay in the forefront for both of us. You can. End of Story.

 

The noise in my head

If you know us and/or read my blog you know that Bryan is not a quiet kid. He talks loud, he will yell randomly and basically when he’s awake you hear him. I don’t really hear him anymore. I kind of notice more when I don’t hear him than when I do.  A few nights ago he went to bed early and Jason came downstairs to talk to me. I said, “Is Bry sleeping?”. He said “sure, can’t you hear how quiet it is? It’s nice to have a little quiet.” It’s true, the quiet is almost so loud you can hear it. It’s just another one of those things you get used to, it becomes your normal and you only notice the absence of it. Really I am way more distracted by the noise in my head, the little sounds of have you been planning for the future for Bryan sounds. He’s 16 so how much longer can I pretend he’s a little kid? Financial planning is one thing for him, but the rest, yikes, the rest of it.  The rules change, as I understand them, at 18. He will need a guardian and other things that I have not faced up to  yet. I think if I’m really honest there is some sort of secret hope left that maybe in a few years he will be ready for college and a “normal” life. I am a bit ashamed to admit that while I try to be realistic all of the time, dealing with Bryan’s adulthood disturbs me more than anything. There is no hiding the fact that my son has autism and very likely will not have a typical life. I truly feel like a piece of crap even typing this, let alone processing it, let alone living it. Beyond, even after all of this time. It is shocking to me that I still have some little place in my soul that thinks he may end up some typical adult. I guess as a parent, there is no end to mourning the differences that a special needs child brings to you. There is still no peace and there never will be. No amount of love and acceptance can ever truly heal the feeling that sometimes things aren’t fair. And I know everyone has challenges and ups and downs with their kids. It’s different, I promise you. I know because I also have a typical kid. There is a difference between worrying about how your typical kid will navigate life and how you navigate on behalf of the special needs one.

I will get over myself and deal with the reality and figure out what needs to be done.

If you are one of my close friends or autism parents reading this you may be saying, “wow I didn’t know you felt this way”. Yeah, I haven’t faced up to it. When people ask if Bryan will live on his own or go to college or drive I cringe, both literally and figuratively. The loud battle between the mind and the heart, the needing to face up to the reality of what is coming and the emotional denial is deafening. When someone says group home I get anxious, like can’t you people just shut up?  I know this sounds extremely melodramatic but it’s just sort of the next thing in my autism journey. I look at memes people post on Facebook and all over the internet about kids that are often undressed or running away or hurting themselves. Those “issues” are not our autism issues any longer. I see those posts and I can measure our growth since those times. While Bryan may get up very early on a weekend and be very loud and disturbing, I no longer have to get out of bed and deal with it. He can make his own breakfast and I smile in my bed when I hear him up early and clanking plates because he’s emptying the dishwasher. The worst he will do is eat too much! The new challenges are deep. I can’t hide behind time anymore. Seems like we are growing up at the same time in many ways.