“Love me a little quieter!”

shhhBryan has been very anxious lately. He is responding, in his way, to changes in our household. Bryan can be very loud. He has outbursts about whatever is on his mind. Along with his loud outbursts, he is doing his usual anxiety things, chewing the collar of his shirt, and jiggling the fat on the back of the arm. He also likes to revert back to baby shows. He has been watching Rolie Polie Ollie lately, and well that was brutal the first time around, don’t need to go there again. Autism is the gift that keeps on giving.
Bryan’s favorite thing to scream is “love you”. So that’s a crazy thing. Your kid says “love you” and do you really want to say “be quiet?”. I feel the collective of all of the moms and dads of kids with autism who are nonverbal weighing upon me. Ugh ugh ugh. On Saturday night he was screaming so much, so many “love yous” and after about 500 times Earl said “love me a little quieter”. Instantly, Earl said “that’s a blog”. I wasn’t sure. I have to always let the ideas rest for a bit. One of the things that is different about autism is the one step forward two steps back that is your life. You can think, wow that behavior is gone, he has matured, whew, dodged a bullet. Before you get too comfortable it’s back with a vengeance. Sometimes a recurring thing means anxiety, change, transition. Other times it means a breakthrough of sorts may be on its way. In earlier years if Bryan was really behaving badly the reward, if there is such a thing, was that some sort of language or behavioral breakthrough was not too far behind. Unfortunately, I do not believe that is the case here.
So what can you do? As kids get older, you can’t just manage it away as easily with a quick incentive. As he ups his game, we need to up ours as well. Interestingly enough, water is one of the best things. He loves to take a bath or go for a swim. He just got out of the bath about 15 minutes ago. It is a band-aid for sure, but a much-needed one for the rest of us. As far as the long term strategy, I need to think. Thinking is very underrated. A quick fix won’t do; I need to get in front of this one.
Tomorrow is Jason’s 12th birthday. Jason gets the rhythm of working with Bryan. He knows when Mommy is fried you need to help out. He gets frustrated with Bryan too but at the end of the day he knows he needs to help out. We have our little Bryan-isms and we include Bryan in these little jokes. Bryan likes to giggle with us and it helps to diffuse a tough situation.
For most of my typing of this blog, Bryan has been sitting next to me. He knows I am writing about him but only reads over my shoulder a little bit. The most difficult part of autism, to me, is that he knows his behavior is making us nuts. He does not want us to be angry with him, he does not want to cause problems, but can’t always help himself. I must remember to always take a deep breath and remind myself that we all deal with things in different ways and it is my job, my direct purpose to always try harder, do better, and listen to all of the love yous.

Piece of Mind

No it’s not a grammatical mistake. I was driving this morning and heard Peace of Mind by Boston. That is way too big of a goal for me right now, so let’s go with the piece of mind. That, perhaps, is attainable. If anyone is reading this, here is a newsflash. People with Autism are people. They understand what you say, they have feelings, and the know right from wrong. Do you blatantly insult typical people? Do you not understand that just because someone doesn’t say, “you hurt my feelings” that their feelings aren’t hurt?autismmom
Bryan is 14 and I still have to shout out to the world that receptively the kid knows everything. He knows, he understands, he feels. Can you imagine someone hurting your feelings and you literally cannot organize your thoughts well enough to say something? Can you imagine being my kid and not being able to stand up for yourself. One of the things I like best about myself, which is also the thing I like least about myself is that I’m not a pushover. If it bothers me, I will address it. I have learned over the years how to temper these feelings, and address issues when appropriate, but I am nobody’s wallflower. If you know me, you know this. Enough about me and my nonsense. But, to insult my boy, well now you are amping this up to another level, and it is all I can do today to contain myself. It is not one person or one thing alone, but the sheer frustration that after all the years of dealing with this, it is still something I must contend with from people who know us. UGH
You have to know your kids. I know Bryan. He does not have a mean bone in his body. I am not one of those parents that walks around with their head up their ass thinking their kids are perfect. Nobody is perfect and that’s a good thing. Perfect is boring. In any event, Bryan is a super good kid. He is very sweet and loving and typically is able to relate to most people in some way or another. He has no venom, no ill will, nada. Why do people confuse inappropriate behavior or autism like behavior with malice? If it seems a little like I’m stamping my feet while I’m writing this, well, I am. Would you hold it against someone who is ill if they moaned or complained or cried?
Ok I will stop venting. Acceptance has to change as he changes. If you love him you and want him to do well you need to keep at it, you can’t expect a 14 year old Bryan to respond to the same things an 8 year old Bryan did. Would you expect this from any other kid? Lots of rhetorical questions today. Lots of pieces of my mind all floating around and I can’t seem to grab onto any and make the noise stop.