IT arrived. The first day of school. We are at the same school this year - a major plus - but there are new things as is the case for all children. New teachers, new classrooms, new kids, new schedule. Even a new bus! The other major plus is that due to growth, which has been aided by intense therapy over the years, our son does not necessarily throw "tantrums" for days and weeks leading up to these major transition periods. He can articulate his fears and anxiety much better. That is a good thing. But we have not reached perfection - a feat unattainable for any of us, but a mom can dream. Rather than multiple tantrums this year, we saw and continue to see different behaviors leading up to the big day. Some nail biting. Regression with our eating. Increased verbal aggression towards his sister. A new irritation for car turn signals (yes, car turn signals). And, my favorite - a constant need to poke, hug, grab, kiss, tug, and hang on...me. Do not get me wrong, I love a tender hug, but this interaction is not delicate. When our son grabs me he squeezes so tightly you can actually hear his teeth grinding as he does it. Overall, these are things that we can deal with, but it does gnaw at our patience level us as we try to acclimate to the new schedule. Including our boy. He does not like to be this way and will recognize it. At times, he will say "mommy, I like the turn signal". Daniel code speak for...I want to please you and I am sorry that my new sensitivity to turn signals is annoying. I can let it pass this one time.
Another positive (I am trying to be more of a glass half-full type of girl these days) is that his teachers, his nurse - all the adults in the school setting - have told us that our boy's behavior in the classroom has been exceptional. This has been celebrated with multiple "rewards dollars" that our son can use in their "store". He has been debating all week which item to select, but I am conflicted. I know that the positive behavior system is important, but shouldn't good behavior be expected in all environments? Does our boy really deserve a trip to the store to pick out a preferred item given the negative/regressive behaviors back home? Then, I think about how far we have come. We no longer have wrap around services or need to consider Applied Behavioral Analysis Therapy (ABA therapy). We no longer have a Functional Behavior Assessment (FBA) in place at school. So, while we have decreased our use of the alphabet soup of supports, I am presented with a familiar question - since we are moving in a positive way, do we alter the support systems that have enabled this positive change? Essentially the question is...do we rock the boat? The professionals tell us that the incessant need to touch me is fear and anxiety driven, likely brought on by the unpredictability of the seizures...which have reared their head again. The nail biting and fighting is due to the emotions around the transition period. The turn signals…they are in a class of their own…but likely anxiety. So, while good things are happening it is all so very complex. You begin to touch one area and there can be a ripple effect.
The parent role in this case is difficult to articulate. I always viewed my job as helping my children to be loving, caring, productive, happy humans. With our son, we certainly work hard to instill these things but we are in overdrive to make sure we reach self-sufficiency as well. He needs that. We need that. Therefore, I am in constant questioning mode…when do we move on from the support systems in place? I mean, will reward dollars have to exist when our boy is 18? Maybe. The answer for me is that I need to just be ok with that and remember not to have any preconceived notions of what 18 will look like for our boy. At age 10, he has come a long way. I know in my quest to reach a goal, I can become too focused on achieving self-sufficiency that I may begin to lose sight of the individual nature of our child. We need to build on and support that uniqueness that makes up our son, Daniel.
Therefore, I will temporarily be using hand signals out my window as we trudge through this new aversion. Hoping we can look back and laugh at it months from now. If not, we will survive.