How did you know?

littlebryanbryancamp2015When reconnecting with old friends it’s very typical to catch up on how your life has gone since the last time you were in touch. I have made new connections with old HS friends and it’s been fantastic. I had a fabulous HS experience and value the friends I made then and I’m enjoying the rekindling. Whenever I am talking with someone new or newish they inevitably ask about Bryan and autism. If you know me at all, or have ever seen my Facebook page you know that my autism advocacy, or rather my Bryan advocacy, is front and center; at this point part of my DNA. So the typical and very appropriate question I often get is, “How did you know Bryan had autism?”. Hmmm there are so many ways to tackle the question because it has layers. Easy, cheap answer is, I knew something wasn’t right but wasn’t sure exactly. He was just under 3 and was a scrumptious little boy. Engaging, warm and affectionate. Not classic for autism. Autism wasn’t a thing, like it is now. It wasn’t on the radar of people back then. He was also my first kid so I had no baseline, no point of comparison. We started to clue in that there were some issues when he started going to birthday parties and was not paying attention during circle time, etc. To make a long story somewhat short (not that I have to, after all this is my blog) but we then started on a course of evaluations and therapies many of which are still with us today. One significant point I remember was going to a therapists office and they had a poster on the wall as some of the “signs of autism”. Does your child point at things? Um, no. Does your child imitate you? Um, no. I stopped reading after that. The mommy gut sucker punch. Hmm. We were not told autism back then, it wasn’t viewed as a spectrum disorder per se, but rather Pervasive Developmental Disorder (PDD). This sounded a bit safer at the time, like, ok some delays, we will get therapy and all will be well. Many years later he is not a neurotypical child; he is Bryan. Still delayed but quite accomplished. And yes, still scrumptious!

It is easy to explain the clinical path, I literally could tell you every therapy, medicine, doctor etc we have done or met with since the beginning. When it comes to my boys I have a detailed catalog that can be accessed at any moment. But, to my new old friends, to explain the journey, that is way tougher. The day to day challenges of living with autism; the heart wrenching feeling of watching your friends kids do all of the typical things kids do while you are at home just trying to figure out how to get some nutty behavior under control is incredibly difficult. I am reminded of one of my favorite pieces on Autism I read years ago so I will share it again.

Holland Schmolland
By Laura Krueger Crawford

If you have a child with autism, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy.  It goes like this: Imagine that you are planning a trip to Italy.  You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip.  The day arrives.   You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides and gelato.   However, when the plane lands you discover, much to your surprise, you are not in Italy — you are in Holland.   You are greatly dismayed at this abrupt and unexpected change in plans.  You rant and rave to the travel agency, but it does no good.  You are stuck.   After a while, you tire of fighting and begin to look at what Holland has to offer.  You notice the beautiful tulips, the kindly people in wooden shoes, the French fries and mayonnaise, and you think,  “This isn’t exactly what I planned, but it’s not so bad.   It’s just different.”   Having a child with autism is supposed to be like this — not any worse than having a typical child — just different. 

When I read that, my son was almost three, completely non-verbal and was hitting me over a hundred times a day.   While I appreciated the intention of the story, I couldn’t help but think,  “Are they kidding?  We are not in some peaceful countryside dotted with windmills.  We are in a country under siege — dodging bombs, trying to board overloaded helicopters, bribing officials — all the while thinking,  “What happened to our beautiful life?”

That was 5 years ago.   My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle torn nation.    With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills.  In the process we’ve created… well… our own country, with its own unique traditions and customs.

It’s not a war zone, but it’s still not Holland.    Let’s call it Schmolland.     

In Schmolland, it is perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end to end.  You can show affection by giving a “pointy chin.”  A “pointy chin” is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person’s shoulder.  For the person giving the “pointy chin” this feels really good, for the receiver not so much – but you get used to it.   For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion.  If you are sad, you can look downcast and say “Oh Pongo.”   When mad or anxious, you might shout,  “Snow can’t stop me!” or  “Duchess, kittens, come on!”   Sometimes, “And now our feature presentation” says it all.   In Schmolland, there’s not a lot to do, so our citizens find amusement wherever they can.    Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00am, are all traditional Schmutch pastimes.  
The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren’t always successful.  It’s perfectly understandable that an 8-year-old boy from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble.  But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year old out of the store kicking and screaming while all the customers look on with stark, pitying stares.  But we ignore these looks and focus on the exit sign because we are a proud people.   Where we live, it is not surprising when an 8-year-old boy reaches for the fleshy part of a woman’s upper torso and says, “Do we touch boodoo?”  We simply say, “No we don’t touch boodoo” and go on about our business.  It’s a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.     And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland who insist that the pants must come off no matter where they are, and regardless of whether another pair of pants are present.

Other families who are affected by autism are familiar and comforting to us, yet are still separate entities.   Together we make up a federation of countries, kind of like Scandinavia.  Like a person from Denmark talking with a person from Norway, (or in our case someone from Schmenmark talking with someone from Schmorway), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions.  “Oh your child is a runner?  Mine won’t go to the bathroom without asking permission.”  “My child eats paper.  Yesterday he ate a whole video box.” “My daughter only eats 4 foods, all of them white.”   “My son wants to blow on everyone.”  “My son can’t stand to hear the word no.  We can’t use any negatives at all in our house.”  “We finally had to lock up the VCR because my son was obsessed with the rewind button.”   

There is one thing we all agree on:  we are a growing population.  

10 years ago, 1 in 10,000 children had autism.

Today the rate is approximately 1 in 250.

Something is dreadfully wrong.   Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic pre-disposition has collided with too many environment insults — toxins, chemicals, anti-biotics, vaccines — to create immunological chaos in the nervous systems of developing children.  One medical journalist speculated that these children are like the proverbial “canary in the coal mine” here to alert us to the growing dangers in our environment.    While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave.   And I will never stop investigating new treatments and therapies that might help my son.   But more and more my priorities are shifting from what “could be” to “what is.”   I look around at this country my family has created, with all its unique customs, and it feels like home.   For us, any time spent  “nation-building” is time well spent.

I used to have so much trouble reading this piece; instant sobbing. I now look at it like a badge of honor. I just know that although my life did not go as planned; didn’t make the fairy tale, I would not change my life in Schmolland for anything.

Live and Learn

Right before the boys left for camp, I learned something interesting about Bryan but didn’t take the time to blog. Bryan loves his ipad, shocking, and uses it in his room to look at all sorts of thing. Teenage Bryan can be found looking at photos of women he likes on fb, the rest you can take from there. He also likes to text me. Bryan is not a great speaker; he often gets words out of order, as if his brain knows what he wants to say, but he either doesn’t know the proper order of things or one of those loose wires in the autism brain just doesn’t make the proper connection. However in texting, which is visual, he gets it right. I am finding that I am having more age appropriate conversations with him over text than in person. So….before he left I texted with him quite often, mostly when I was at work, to find out more about what he was thinking. It sounds kind of basic, but if you are an autism parent you know any improved communication, any tiny drop of insight into what your kid is really thinking about, is a treasure. I fully intend to do this more when he returns. It is also cool to see him type. He types pretty well. His handwriting has improved over the years, thanks to thousands of dollars of OT and some growing up, but it just feels more grown up to see his words in typeset rather than in kid handwriting.

Bryan, Jason, and I went up to NY to get them to camp. Bryan goes on a camp bus in Manhattan and Jason was going this year to a friend’s house in NJ and going on the camp bus with him. I am a New Yorker through and through, and my boys know that they are in for an action packed few days of seeing friends and having experiences. I love that Jason kept saying, “we’ve been in NY for 3 hours and I haven’t had NY Pizza or a bagel yet!”.  I am so proud of the progress Bryan makes each year of controlling his anxiety about leaving for camp. Last year he didn’t eat or sleep for 24 hours. This year he did both and managed to laugh and have fun with Jason and me. I was so proud of him when he got on the bus and held my tears in until I was no longer visible to him. Tears of joy, relief, and pride. Jason and I were having fun talking about how Bryan did a great job!!

The night Bryan left we went up to visit my BFF and her family. Jason and her daughter have a great bond; they had not seen each other in 2 or 3 years but picked up like it was yesterday. He and I were sharing a bed that night (heaven for me since he’s a great snuggler) and when we were getting ready for bed he said “Mom I really miss Bryan”. Sounds fairly normal right? wrong!! When your brother has autism and talks non stop and for the past 24 hours has repeated the same question thousands of time, it is somewhat shocking he would say this to me. But then I had a moment to reflect on it; for him, he has never had a sibling without autism, he only knows his brother is away and they won’t see each other for seven weeks. It does not matter to him what the challenges are, he loves him with all his heart. I was embraced by the warmth and maturity that is Jason. A minute or so later he said, “mommy snuggle me.” Oh ok…. sheer heaven.

So now that they are gone and enjoying themselves, I try to prep for when they get back. I am working on chore checklists for them and making sure they have what they will need for school. However, the most important thing I am doing now is thinking. It is a very underrated activity, yet crucial in parenting or any endeavor where you want to excel. I am trying to work on myself to think about their needs, what are the emotional motivators and what are the requirements for me to help them charter the teen years. Funny how the quiet is wonderful and relaxing yet I long for the noise and horseplay.