They just don’t get it

Having a child with special needs of any kind sometimes feels like being a part of a secret group.  You feel like you are constantly taking on people staring and silently judging you and your child.  They just don’t get it.  It is a lonely feeling when your child (who outwardly appears to be a "typical" toddler) is throwing a tantrum or being utterly defiant and no amount of scolding or coaxing is going to make her behave and do as you say when she has it in her head that she wants to do something or doesn’t want to do something.  Heck half the time I don’t know the best approach that will lead to her doing the closest to what I want with the most minimal fall out.  Do I pick this battle?  Is this lesson important? Do I appear to be a push over and just let her jump in the mud puddle when I have already told her expressly NO because we are leaving in 10 minutes and I don't want mud in my car or do I stand my ground and endure the tantrum that is sure to follow?  The screaming and flailing tantrum.  The stares I get because people are sure I must have slapped my child for her to act this way.  This may sound like typical toddler behavior but I promise it is AMPLIFIED.  When she is in that mindset she doesn’t care about the consequences, there is no such thing.  She is only in that moment.  That. Single. Moment. There is no later, or tomorrow, she doesn’t understand something that may happen later.  Everything is now.  You can't say "when we come back tomorrow we will bring your bike and you can play"  Tomorrow means nothing.  She may agree and calm down but then when she realizes you don't mean now and in her mind you have tricked her and are going back on your deal.  The deal we just made....10 seconds ago...that tomorrow we will do it.  We practice calming techniques.  Things that will keep that mindset at bay.  Ways to make sure we don't get into that headspace where she will just break down and possibly harm herself in the process.  She has pulled out clumps of hair.  Bitten herself to the point of bleeding.  My sweet, smart girl will flail and hit me and pull my hair.  I fear for the day I cannot restrain her myself.  When I can no longer put her in her 5 point harness seat and keep her there until she is calm.  I am sad and embarrassed to say that sometimes I get angry at her when she is being so defiant and I have to take her out of the situation and put her in her car seat when we are out in public.  But I am not actually mad at her, I am mad at how I feel people are judging me and it shortens my fuse.   Which is unfair.  We had this very thing happen a couple nights ago.  We were at my 12 year old son's football practice and she was playing with some other kids and these sweet little boys had brought their bikes and let her have a turn.  They were so sweet and sharing.  When it was time for their mother to put the bikes in her car, because practice was wrapping up, my daughter got on the bike and refused to get off.  The mom was trying to tell her it was time to put them away but she just wouldn't budge.  I had to physically remove her from the bike and then put her in her car seat to calm down because she was acting psycho over it.  She had had plenty of turns on the bike and we made a deal to bring her bike back with us the next time... but of course "next time" means NOTHING.  Afterwards I felt like everyone was looking at me and judging me especially since it sounded like I had punished her severely when in actuality I only removed her from the situation.  Then she calmed down because we had made the deal about bringing her bike next time and when it was time to pull out of the parking lot she lost it all over again... because I had surely tricked her by promising something that was not delivered immediately.   I know it sounds like absolute bull crap when I tell someone that my daughter has a genetic disorder that is predominantly behavioral in nature.  Yeah right, she is being a brat and you are making excuses for her.  I see it in their face.  They just don't get it.