Sunday, February 10, 2019

Dear Autism Parent Groups




Dear Autism Parent Group,

You have stopped me feeling completely isolated. You were the first people to make me feel like the things we are going to face are okay. Would be okay. Will be okay. You saved me from asking the questions I wasn't ready to ask, didn't want to need to ask, because I could scroll in near anonymity, and find the answers. Not in yet another book, but in posts from a community of people who knowingly or not, may have saved my sanity in those earliest days.

Before I was ready to talk about the bad days. Before I heartily understood, not just logically, that the bad days were just that, bad days. Before I had the courage to believe people would understand I meant that my child was having a bad day, not that I had a bad child, you were there. Sharing. Comforting. Reaching out.

When your child had a bad day, you shared. I wanted nothing more than to hold your hand, reach out, hug you, comfort you. I also felt just a little better. Seeing that other moms, other families had the hard days too. Especially in the beginning, before I was quite ready to speak about it.

When your child hit a milestone, smiled, talked, got a job, wore shoes, potty trained, I cheered, often aloud. Your triumphs and celebrations were palpable and infectious. They gave me hope. They showed me that all this work could be worth it. Would be worth it. Is worth it. I also, though I never dared say it until know, felt the tiniest twinges of envy. When will my child get there? Will my child ever get there? Are these all “high functioning” children? This too, proved to be amazingly helpful to me. The bittersweet feelings evoked in each celebratory post gave words to unspoken fears. Helped me to sort out what to prioritize for my child. Helped me set clearer goals.

Now I speak a lot about this. 4 years after our official diagnosis. Now when I feel like I am over sharing, I remember what your sharing did for me, for us and I share again with the hope that our story may help someone the way yours have all helped me.

Thank you. Keep doing what you do.

Tuesday, January 30, 2018

Child Led Growing - Autism and the Potty in Our House


  It seems like everyone knows the concept of baby led weaning for breast feeding mothers. A simple enough concept. I haven't personally seen many mothers who choose this route get a lot of flack for it. So, why then, does teaching your child things as they seem ready get so many objections? Or to rephrase somewhat, why does the order in which our children learn some things seem to be of such importance to so many people? Usually people whom it does not even effect.

  In our case, my son is five and a half years old, moderately autistic and hyperactive. It's a keeps you on your toes combination for sure. Under all the symptoms hes an exceedingly bright, sweet, fun little boy who craves approval as much as any kid. I've taken to following HIS lead on what he's ready to learn and do. Obviously, I won't be listening when he thinks he should drive the car, don't get me wrong, but as far as more age appropriate and milestone specific things.

  At three years old he started to speak. One word here and there, then he fell in love with all things numbers and would count incessantly. He took to shapes and would recite the names day in and day out. Next was colors, and "rainbow". In school he started to progress more with communication, and soon came "all done", "more", "I want" and some scripting from favorite shows.  I do not have adequate words to tell you how huge this was for us. Remember your babies first words? Imagine that, a year and a half late.

  By the time he spoke and J and I found ourselves over the moon with each new word and behavior, he had been diagnosed long enough for friends and family to get why we were so excited. They had seen enough to understand it was more than just a speech delay. By the time he was three and a half, he was reading, using a certain level of basic phonics! He loved math too and could do simple addition. "Oh how smart!" we would hear and other similar sentiments. And so right they were! I am biased, but my baby is a smarty pants.

  What this seems to have overshadowed was how many communication and social delays he truly still had. To someone who is not with him on a regular basis I can easily understand why they would be confused when he counts and reads and does all these things but cannot grasp the concept of greetings, or conversation, or fully understand when told to wait.

  Fast forward to our second year of preschool and Moose is now four years old. At the start of the year we as usual are asked, "Has he potty trained yet?" No. We cannot even get him to sit for it. As far as the school was concerned that's fine. send diapers and spare clothes and at his IEP we will see where he is and go from there. BUUUTTT....

  Outside of that gloriously trained and understanding environment, people started to notice more that he was in diapers than his stimming meltdowns and communication deficits.  The questions started. We started putting undies over his diaper so some insensitive git wouldn't say anything to him, he is after all, autistic, not deaf. Not unfeeling. 

  We tried on and off with the potty but it stressed everyone. Besides, he was making such amazing progress elsewhere. He started to use simple sentences appropriately. He could answer some simple questions. He called J "Dah-da-dee" and knew to get me if told "Momma". He learned his PECS system. He learned token boards and would follow simple directions. These things are huge to us. He worked so profoundly hard to master these small things. So, who cared about the potty.

  My not so little Moose is now five years old, and in kindergarten. We are all working on potty training him. It's not taking. He sits on the potty not less than 30 minutes a day. We have all kinds of rewards, He has been successful on odd occasions, including one poop to which he said "See you soon" before flushing. Between his amazing team at school and us here we know he can hold it. In fact now he specifically holds it.  His communication is coming along wonderfully, but not well enough for him to explain why.

  I am his voice, when he cannot tell us, it is my job to decipher all of his cues and patterns and speak for him. I have become so good at this particular skill in fact that I appear almost psychic on some days, and can calm him without knowing the trigger often. For all our months of diligence, I can tell you this, he is not ready. It's that simple. We still go sit and try not less than once an hour, but he isn't ready.

   So I focus on all the things he is ready for. Added little achievements, more self grooming. Multiplication, (yes you read right, just the tables), learning to hold a conversation which currently is mostly us repeating each other, I promise its adorable.. He is starting to take an interest in other kids! Other kids! He's learning to help in the kitchen. He's trying to use words when he is upset. So many big things.

  So yes, he isn't trained yet. Yes, we are still trying, but we're focusing on the growth and learning that he is showing readiness for. Child led growth. It's become our thing. And you know what? It works for us. It's working for him. So the next time you see an older child or even adult needing diapers or assistance in the bathroom, please remember you don't have the whole picture. Ask questions if you have them, but do so kindly. He has autism. He has feelings.