How sweet it is!

Over the years I have always shared that although autism sucks most of the time, there are some spectacular things about it that should be shared. At this time of year as we head into the giving thanks season I am reminded just how much autism and Bryan have given to me. Although each person’s autism is shown in different ways, and each kid is unique, I am sure there are tidbits that apply to all.

Slow Motion. Kids with autism grow up in slow motion. Typically there are all kinds of delays involved, fine motor, language, etc. The kids will often “get there” but not on the regular schedule. The benefit of this is that so much of the awkward teenage stuff either doesn’t show up at all or is way later. Bryan is never embarrassed by me (at least not that I know of!). He will go anywhere with me. He will kiss me, hold my hand, put his arm around me anywhere and everywhere. He will tell me he loves me all day. No eye rolling, no sarcasm, no blow offs, no fresh mouth. yay.

Structure. Imagine your mornings with your kids and they are completely compliant. Bryan wakes up early and makes his own breakfast, takes his meds without a reminder, showers, uses deodorant, brushes his teeth, gets dressed, makes his bed and is ready for school without even a peep or a prompt. Jason, not so much….

Perspective. The smallest accomplishments are the hugest victories. Hearing your child retell a story without looking at it, hearing them answer questions in complete sentences, going to a 2 1/2 hour movie where they sit quietly. All small things that we take for granted with our typical kids. It just happens. When your kid has autism, these events are monumental, can be rare and are precious. You learn to live more in the moment, because the next moment things can easily go sideways and the struggles they go through just to achieve what a typical child does automatically is enormous.

Transparency. Bryan loves openly and warmly. He has a great radar for genuineness and will respond very well to people he feels are sincere. While not always able to engage in a real conversation, he understands the need to relate and will associate that person with an event. When he sees you  he will often tell you a celebrity you look like, that you are handsome or pretty or recount the last activity you did together or the last time he saw you. This may not be the best way to start a conversation, but it certainly shows you that he is present and cares about you.

Friends. Making friends with other families who have a kid with autism is the greatest!! I remember years ago when we were three families hanging out and the kids were little. On any given weekend, while swimming, some kids were naked, some were screaming, some were pinching and we never flinched. We kept on barbecuing and sharing stories and experiences. Our bond was deep and has endured. Acceptance from people and establishing relationships with people you might not otherwise meet is a gift. You learn so much about life and most importantly, about the kind of friend, parent  and person you want to be. I have also had some of the heartiest full on belly laughs with these friends over things that are so far from funny.

Silliness. Bryan can be very silly at times. Silliness is fantastic. Giggling is infectious. Not teenage funny, but little kid silly. I know it’s bad, he’s almost 16, but as the kids get so big so fast, you start to miss some of the pure joy of a little kid. It just doesn’t leave so fast with autism. Bryan can take make us laugh by some of his expressions and perspectives on things. He comments on things that are obvious and/or inappropriate yet very literal and it can be hilarious. If someone has a moustache he will call him the “moustache guy”. Not so funny to the person, but can be funny to us.

Memories. Bryan has a crazy awesome memory. He will look at a photo and tell us everything that happened that day, including what we ate, who we were with and if anything remarkable happened that day. Sometimes it’s funny, like when he says, “we ate beef jerky and ice cream” but not so funny when he says “you yelled at me at the Magic Kingdom”. Either way the memories are great, and his outbursts about an event or photo usually trigger some sort of funny story or laughter.

Writing. If someone told me years ago I would have a child with autism and I would write an online journal about it, I would have glared at them like they had 6 heads. None of this was on my radar or even in the realm of possibility for me. I never really liked to write that much and certainly autism wasn’t even on the top 100 fears I had going into parenthood. Yet here we are. I love to write about Bryan and autism and I am so humbled by the responses and encouragement I have gotten from close friends, old and new friends, family, coworkers, etc. You people propel me at times I thought I would not have an ounce of energy left.

So it’s not Thanksgiving yet, but it’s never too early to be thankful for the blessings given to you by your children, no matter how unexpected or unwelcome.IMG_1533

Gut check.

IMG_1514This week has been filled with lots of phone calls with friends dealing with all sorts of medical and behavioral issues with their kids. I love to brainstorm with my friends for their kids and I am grateful when they do the same for me. One theme over the years that keeps surfacing is the conflict between what an expert or so called expert tells you and reality. Growing up I always revered medical professionals and really professionals of all types as the ones who were in the know. I could not as a kid or even a young adult think that someone with a real degree, accomplished, could be wrong or not qualified to give an opinion, diagnosis, strategy. Autism. Once you hear that word, it’s a crap-shoot. This is not exactly a newsflash but I feel there is a really important lesson here that needs to be explored. And, it’s not limited to autism. Any medical/behavioral issue that your kid is facing has the potential to make you question everything.

So you take your kid to a doctor, a specialist, a clinician, a therapist. This person is often highly recommended by someone you trust, or they are referred to you for something so foreign to you, that any recommendation feels like a life-preserver. The problem is, they only get a glimpse of what you are dealing with or what you see on a day-to-day basis. We have been to many of these types of appointments for both boys over the years. The problem is that as a parent, and now I may take some flak for this, as the mom, somewhere in between your brain, heart and gut things seem off.  I love examples, so here goes:

  • You go to the psychologist to deal with behavioral issues. For Bryan it can be the constant anxiety and talking. He is forever asking “are you happy?” and says Mom about a thousand times an hour. Psychologist says, I think you will have to start ignoring him. Sounds like an easy fix, right? Just let the kid talk and go about your business, after a while, he will stop if you are not paying attention to him. Oh ok, doc. Here is my response: we have a guest room, please come stay the weekend and show me how you would display this ignoring behavior. Or better yet, come and just spend the evening, I super duper triple dare you. I say it can be done for a short time, but no one can sustain that kind of ignoring.  So while very good and easy clinical advice, the practical application is far from practical.
  • You decide to get a second opinion. It’s something important, something that is nagging at you that you want to have double checked. Typically this could involve a neurologist, a psychiatrist, some sort of MD. You go for peace of mind but you leave with very few pieces of your mind. They want more tests some invasive, some not so much, and they completely discount the previous doctors diagnosis/thoughts. What do you do? Where is the quarterback for your  team telling you how to run this play? What’s the next move? Was the previous doctor an idiot? How do you know?
  • You decide to come up with some strategy to help you cope with a bad behavior. You know it may only be a band-aid, but band-aids are a pretty reliable product. You speak to a clinician who tells you that this is going to help you now, but may be more of a problem later. You shake your head and again invite this person to spend the weekend.

So really, what’s the point of this? Why am I telling you about this stuff? I’m going to tell you. You, the parent, the mom, you are the one who knows. Trust your gut!! Trust the parent/mommy instincts that got you this far. If something a professional tells you sounds too theoretical, too impractical, too difficult, say thanks and move on. We all expect too much. As a parent of a child with autism they want you to come home after work, spend quality time with your kid practicing use of language, do some sensory exercises and, oh yeah, my personal favorite, limit their use of electronics. All day long the kid was receiving behavioral incentives in the form of electronics and then you get home and tell him he can only use it for 30 mins. Good f-g luck to you. The point is being a parent is a lot more about loving and accepting your kid, in my opinion, than being his or her doctor, therapist, etc. Your kid is just happy to have your attention, being together and just sharing any activity is more important than the activity itself. I find my boys are really happy when we are driving. They know that I Iove my  new car and I find if I am singing, yes singing, they know I’m happy. Jason will spontaneously say,”Mom I love you” when he hears me singing. It’s not because I have a great voice, it’s just that he can hear the happiness.

So for some of the heavy duty medical stuff, I say get a few opinions but remember they don’t know all. Anyone that is dismissive of your opinion or condescending needs to be called out on it or immediately discounted. Remember anyone can go to school to learn something, but no one knows your kid better than you.