Thursday, August 29, 2013

It's Not Fair!

I rarely have those "whoa is me" pitty moments but for some reason today I did. Let me start however by saying that H had a wonderful first day of school and that it was everything we had hoped for. He enjoyed the smaller ratios, really enjoyed his teacher and even went on the potty!! Granted he missed and peed on his pants it was still counted as him going on the potty so we will take it!
So why do I think I deserve a small pitty party today then? My birthday boy started Pre-K today and it was only because he is considered disabled. I should be thrilled he is getting top notch care and education with PPCD but there is still a part of me that is sad that he is only getting this due to his, well disability. I need to put that aside and focus on the needs of my child and know that this is not a bad thing but that this is what he needs and he deserves, what we have fought to hard to get for him.
When I saw my sweet boys face walking down the hall I knew that he had a great day and was adapting to his new environment. I could see the exhaustion in his face but I saw the pride he had when he got off the bus. My co worker told me as she retrieved him from the bus he was very excited. I later read a note from his teacher that went into great detail on his day. This was reassuring and she was glad to have him in her class.
Tonight was my oldest son's open house at his middle school. Sean is in 8th grade and we are really focused on getting him prepared for high school. The original plan was to keep H at home with dad so that he could relax and not have to endure the insanity of the outing. However that plan quickly changed when Chris was needed to help out at TLC. I was left with two choices. Take this birthday boy to his big brother's meet the teacher or stay home and have a quiet evening celebrating our big 3 year olds day. I want Sean to know I take great interest in his education and want to see him succeed so of course we opted to go to his open house.
In order to make this evening happen in my mind I rushed home from the stables to grab H's iPad. I figured while I am talking to teacher's he can sit on the floor and go to town. I had this perfect plan all mapped out and was only kidding myself that it was fool proof. After all when is a child on the spectrum EVER predictable?! I think in hindsight this was his way for getting back at me for now jacking with two birthdays of his.
We showed up with about 15 minutes left of the PTA meeting. I really wanted to get info on this so that I might consider getting involved and also know what is going on with the school. Aside from sitting in the way back of the cafeteria it was almost done so I missed most the info and I could hardly hear. I sat with a friend of ours who is almost like an uncle to H. I knew if he started struggling he would understand. However what I was not prepared for was H to start his uncontrollable laughter that echoed and boomed through the cafeteria. Uncle Seth was not much help in fact it was all he could do to refrain from laughing uncontrollably himself! I stepped out a few times till he stopped, would return hand him his iPad and breathe, only to have him start up AGAIN! I would like to assume the PTA meeting ended early due to the fact that there was no more business to discuss and not due to the fact my child was so loud that more attention was on him than the PTA president.
We made a  bee line to Sean's first period Science class. We still had about 8 minutes before the meeting of the teachers actually began but thankfully his science teacher saw my sense of urgency to get this done so she gave us the skinny and we bolted. We made it to the next classroom, this one was actually his 3rd period class however for the sake of back tracking we just went to it next.  This is about the time it went down hill. I am thankful to a friend of ours who was in the room who can fill me in on what I missed since this was the class that Sean wants to drop and I want to know what this class entailed before letting him drop. I got as far as it being a computer class and it happened. I wanted to suddenly melt away into the floor and just vanish from all the eyes that landed upon me and H.
I generally do not become phased by the quirks of H. In fact I have learned to embrace them. However I do recall what it was like to be in that awkward teenage years and how easily embarrassed they can become. I was trying to make this as enjoyable as possible without drawing attention to H and making this about Sean. I quickly grabbed H stepped out in the hall and fought back tears. I was caught off guard by those tears and did what I could to quickly stop them. No more attention needed to be drawn to us. He was to far gone to even use a brush or chew tub. I managed to get his weighted compression vest on but that was minimal help at best. Saved by the bell! It was time to take Sean to his next class. I avoided eye contact with everyone grabbed our stuff and bolted to the hall.
We headed over to the gym where I thought we could be safe. Sean and I agree we were safe for about 10 seconds. H sat up on the bleachers and when he realized there was a echo in the gym he proceeded to growl, shriek and laugh as loud as he could to hear the sound. I don't know about you guys but my gym teachers where always pretty intimidating and these guys were no different. I I was hoping that the next 4 minutes and 50 seconds would just hurry up so we could leave. I am sure the other parents around us felt the same.
We got to the next room and realized he was done. Between trying to turn on all the computers, take down a desk, strip and hide under a table it was all over. Oh did I mention the teacher never once acknowledged us continued talking to her co workers and just let us sit there. Sean was even embarrassed by this teacher and told me he was sorry we just had to sit through that. I will email her I guess.
We got to the car and I let out a sigh of relief. It was over this hell was over. Then it hit me. Today is H's birthday and I just dragged him around for over an hour through a middle school with tons of people, lots of noise and no familiarity to it at all. I realized this is the second birthday in a row I have essentially screwed him on. I felt crappy. This is not fair! It's not fair to us and it is certainly not fair to him!
Last years birthday was spent in a developmental pedi's office in Lubbock being told our child had Fragile X and he needed genetic testing and nothing much more was said to us. We made him endure a 2 hour car ride, a 20 min doctors apt that was a joke and then 3 big males holding him down to draw blood. Gosh I guess if this was me I would retaliate and let it be known that I don't enjoy spending my birthday like this at all!
When we put ourselves in new situations with H we realize how unfair it is for us. These things require pep talks and social stories, every trick known in the book and tag teaming. I did none of that tonight and that was unfair to H. This is not resentment towards H it is my frustration of this Spectrum Disorder that now consumed our life.  However if you were to have sat back and asked Sean if he cared about his brother's behavior tonight he said he didn't care. He knows this is who he is and accepts him and if his peers can't its their loss. So while this all seems so unfair its just how our life is. To be comfortable and accepting of this is now up to us regardless of our situations we are in.