Wednesday, April 11, 2012

National Autism Month

I struggle with this month.  I have mixed feelings about this month.  I am grateful for the awareness and spotlight it puts on our children.  I am glad that it ensures that Autism doesn't fall off the national radar.

I am saddened by this month.  At times, it seems like a lot of the stories are focused on causes and cures.  What happened?  How can we fix this?  It seems like what is forgotten is the now.  The people behind the stories.  Who our children our and what amazing things they can do.

I resent the resurgence of the vaccine debates whether in the article itself or in the comments.  I feel that it detracts from the issues at hand- early intervention, funding, adult support, caregiver education and support- and muddies the water with antagonism.

I feel bad when people tell me they are sorry for Lennon's Autism- we usually get this a couple times during this month.  We aren't.  This is who he is.  We believe that he isn't broken or lost.  He is simply different- as we all are.  He has brought so much joy into our lives.  He has taught us patience, strength, kindness, and unconditional love.  He is amazing and brilliant.

I am grateful for the attention and concern that this month brings.  I am grateful for my son.

Tuesday, March 20, 2012

Looking back at our goals

Recently I was reading my early blog post and found our goals for our Little Bug.  Here they are from September of 2008-
1.    Get Little Bug to go to sleep without a fight- whether this means giving up naps, changing work schedules or a weighted blanket, we have yet to discover.

  •  Beef up his sensory diet with daily activities that help him regulate his sensory system
  • Continue down our road of learning sign language with him. A little background on his speech, previously, his max speech capacity was 10 words. Some- like da, ma, away- for airplane, wuwu- for train, were constants. Others, like down, up, couch, sit- they would come and stay a while. Then like nomadic words, pack up their things and leave. Since beginning sign language, he now has 19 words- constant words that stay and build homes- and almost 20 signs- that currently have long term leases and we are hoping that they will buy the property.
  •  Prevent self-injuring behavior- like biting and head banging.
  • Help him realize and reach his full potential through realistic challenges.

I wanted to check in on each one

1.  Sleep.  Little Bug now goes to sleep by himself.  We read him a book, carry him to his bed, tuck him in and give him love.  Then off to dreamland- for a little while.  He doesn’t sleep through the night always and often wakes and comes to our bed- usually two to three times a week.  Little Bug is also not nighttime potty trained and at times has accidents that cause him to wake.

2.  Sensory diet.  This has been achieved.  We have things for all the inputs- from spinning and swinging for vestibular to jumping and blanket for proprioceptive.  We have chewies and snacks for oral stimming and have made sure that the clothes and blankets are of the sensory friendly type

3.  Sign language.  This goal has been blown out of the water.  Little Bug not only tackled sign language but now has tackled English.  That is to say, he never stops talking. Ever.  Even when sleeping- still talking.  With speech comes different challenges.  He has echolalia.  Commercials are a favorite of his.  He will grab a tag line and repeat it to the point of craziness.  He also gets “stuck” on snippets of songs. For example, he will sing two lines of the Itsy Bitsy Spider over and over and over.  He also takes thing incredibly literally. Needless to say, this can make things very challenging

4.   Self-injuring.  Although this has decreased, it still occurs during stress as well as part of stimming.  For example, he will sit on the couch and repeated hit himself in the face with an open hand while he watches TV.  He also has begun to bite himself and others again as part of a way to release stress when he is frustrated or angry.  He bit me the other day hard enough to break the skin through my jeans

5.   Help him realize his full potential- we will never stop challenging him or growing with him.

Now our new goals

1.  Quality sleep- sleeping through the night consistently
2.  Finding positive outlet for self-injuring stimming behavior.
3.  Through play dates, organized activities through our local children’s museum as well as zoo camps, ensure that Little Bug has multiple social skills oriented opportunities outside of school.
4.   Helping Little Bug to be more independent.  He no longer wants to be watched by people outside the family and clings to Nick and I. We need to challenge him in order to get over this fear and ensure that he can be cared for by someone other than us.
5.   Safety awareness.  Because of his sensory integration disorder as well as “mind blindness” that is common with people on the spectrum, we need to work with him even harder to get him to understand safety challenges and
6  Help him realize his full potential- we will never stop challenging him or growing with him.

Tuesday, February 28, 2012

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.

Friday, February 24, 2012

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.

Tuesday, February 7, 2012

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.  

Tuesday, January 31, 2012

Assume the position

Of late, that position in our house is lying face down on the floor crying- if you are Little Bug.  This move has been the most difficult for him by far.  He has begun to have some trouble with potty training. At one point, he had three accidents in roughly an hour.  His self injuring- specifically biting, hitting, and scratching himself- has increased in frequency.

Nick and I were kinda taken off guard by how challenging this has been for Little Bug.  Last time we moved, we had a week to do it in and although it was challenging, Little Bug was not as stressed.  This time we had over a month.  The house closed on December 9 and we didn't move until January 20, however the change has been tremendous.

I wish with all my heart there was a way to make this better.  We have included him in every step of the way- looking for houses, getting the paperwork signed, he painted and decorated his room, and helping with general tasks around the house.  We don't have any more suggestions.