Words- almost 4 years later

I remember when we used to count the number of words Little Bug said.  He started out this blog with no real words- just 10 word approximations at the age of 2.  We began to teach him sign language and then he was able to somehow bridge the gap to speech.  I still have the lists of words- spoken and sign- that we used to maintain.  Each word was (and still is) an amazing gift to enjoy. We have since stopped counting what words he can speak.  That is not to say that he doesn’t surprise us.  Oh no, he surprises us with works like “symbiotic”, “preservation”, “apparently”, “crap” (yes crap- could be worse!), “functionality”, “parasites”, and many more. 

He has also begun to surprise us with words in a new way- reading!  He is reading- and I mean really really reading.  He has at last count over 100 sight words- based off of the flash cards his class has.  He clearly knows his phonics- he constantly correctly sounds out words.  But even more amazing, is his actual reading.   Recently Nick and I took him to our local Children’s Museum for parents’ night out. When we came to pick him up, they were doing circle time, but with the children reading the books.  Little Bug sat through a version of “Green Eggs and Ham” and then decided he was going to read “Brown Bear, Brown Bear, What do you see” out loud to a room full of children and adults.  He did it!  He read the whole thing- showing the pictures and all.

He continues to amaze and surprise us every day.  I hope that feeling never goes away.

How my son perceives strep throat

This past week, Little Bug has been really sick- a burning fever and non stop vomiting.  He was vomiting so bad that he couldn't hold down Tylenol.  While we tried to treat him for the flu- because he didn't express any other symptoms (other than the obvious vomiting of course), we took him to the doctor on Tuesday.  Low and behold, he has strep throat- bad enough that the doctor said he was "running the test just to confirm what I already know".

Nick and I were shocked because Little Bug didn't express any symptom of strep throat- he was eating like a horse and didn't say that his throat hurt.  In fact, he had trouble identifying when he was going to vomit.  The only symptom he had, and I quote, "my brain itches".

Little Bug still seems to have a lot of trouble interpreting the signals of his body- including pain, temperature, and normal bodily functions like needing to go to the bathroom.  Things that you would think shouldn't hurt are regarded as human torture however things that you would think would be incredibly painful- such as when he broke his thumb or recovering from a surgery- are treated like no big deal.

I'll never forget when we had taken him to the beach and when we got home we noticed that he had little pieces of glass in his feet!  At his second birthday party, he wanted to play with the ice in the bucket around the soda.  Although most of us would have stopped after a couple of minutes, he continued playing to the point that he had to be forcibly removed.  He constantly cries that his shower is too cold but as his caregiver you know that the temperature is right where it should be.

We have done OT- including brushing, "texture exposure therapy", weighted items, and more vestibular input activities than we can count- but nothing seems to touch this sensory disconnect.

Strength in adversity

I need to get something off my chest.  This doesn’t have much to do with Autism.  Instead, it has everything to do with strength in adversity.  (Please note there is one instance of an F-bomb.  Justified I think in this case.)

This is something that autistic children demonstrate every day- whether it attempting to say a new word, motor plan getting dressed, or dealing with judgment from their peers.   Little Bug has certainly had his share and is developing ways to do with it.   Another kind of adversity that Little Bug has to deal with is discrimination. You see, and you should know if you have been following along, Little Bug has two dads- Daddy Nick and Daddy Blake (that’s me!).  Daddy Nick was born male but I wasn’t- I’m transgendered.   This has been something that we are honest with the world about- especially with Little Bug.  We thought that the people in our lives didn’t care.  Apparently we were wrong.

This weekend we had some family over and one of Little Bug’s cousins took it upon themselves to yell at Little Bug about me- that I wasn’t his dad and that because I had boobs I couldn’t be his dad.  This child told my son that I was Little Bug’s mom.  Little Bug simply stood his ground and repeated “He is my dad and I love him.”   I was able to intervene but it has been really upsetting (HA! Fucking understatement) to us all.  See this isn’t the first run in about my gender with this child.  At first, we figured that it was a normal curiosity from children.  It now just seems like anger coming from another source.  Given the persistence, I don’t believe that this is coming from tis child.  I am sure that this is coming from his parent(s).

Why does this matter?  In this day and age, isn’t any child lucky to have an involved parent let alone two involved parents?   Do the genitalia of the parents really matter?  If you have read this blog or known Nick and I, you know that we have worked and sweated and cried to help Little Bug reach his highest potential- whatever that may be.

What is surprising is that 8 years later, people in our family still have a problem with this.  People still call me she or Little Bug’s mom.  Why?  What is the hold up?  It is honestly astonishing to me.  I can understand any challenges in the first few months, but years later?  It honestly hurts.  It hurts because I expected these people to at least respect us.  Notice I didn’t say “accept”, “agree with”, “understand”, “empathize”, or “love”- just respect.  Respect- something that each and every person deserves and should demand.  I don’t have to agree with you or your choices, but I do have to respect them.  This should be afforded to you whether it is your sexuality, gender identity, religious beliefs, or the way you choose to treat your child’s autism.