My hope today.........

This is the apple cinnamon, gluten free dairy free coffee cake with ocean blue glaze that Ty (with some help from me) made yesterday to celebrate my birthday. He chose the ocean blue color because he said he knows how much I love the ocean. That's the kind of kid he truly wants to be. It's just too hard most days. So this is our second morning in a row where my husband is taking our little one to school, rather then Ty and I taking her on our bikes. This is a break day- a day with as little interruptions as possible. With minimal stimulation that potentially will overwhelm his system. A day that I hope will be full of very purposeful activities- everything providing the proper inputs and support to his over worked system to bring calmness, organization and at least a little regulation. A day that I hope he will smile more, engage more and feel more comfortable in his own skin. This is my hope for him today. If it ever seems like our son runs the show in our house- well it's because he does. Not necessarily HIM, because even on THOSE days he's not in control of Himself! It's the Autism, the Sensory Processing Disorder, the Post Traumatic Stress Disorder, the mood disorder. And he struggles to keep them all in check- to not let them take over his being. And that's why if there is just too much happening, too many inputs that his brain literally doesn't know how to organize and place in the proper bucket to achieve the proper output, to literally allow the things that everyone else never thinks twice about (eating, sleeping, all the things our body is supposed to do naturally and that system is in automatic control- sends the message and our brains respond with the correct response sending that message to our body.) Never really thought of it, did ya?? :) So much of what our bodies and brains do are without thought- it's how we operate as beings. So when those things don't properly develop, when messages are crossed, when signals are not ever sent or they flood the body to quickly- imagine the short circuit that happens. Kind of sucks, huh! I think so too. I know there's not one diagnosis to blame for all this. And I know a lot of people of special needs kids just don't probably understand even still our absolute dislike for these "things" that control our son. We love our son- you cannot even believe the unconditional love, support, admiration, and yes sympathy we have for him. No one should ever have to "suffer" and yes we believe he suffers a great deal- trying so hard to control his world, his body, his brain. The kid honestly probably doesn't even know what it feels like to feel "good". His bowels are a constant source of anxiety and discomfort- despite all of the medical worlds interventions. His brain is constantly flooding his system so that it short circuits and he literally can't deal and falls apart. His body is constantly telling him he is in danger- run run run- fight fight fight... you are being harmed, you need to protect yourself, you need to stay safe. Can you imagine- feeling this way ALL THE TIME! Our son does- he lives in this state. Every knows FIGHT OR FLIGHT. Well, it's part of our systems for a reason of course. But when your system can't regulate or send the correct signals therefore always triggering this fight or flight response- this is his every day state of existence. For him to not be in fight or flight- is quite a battle, quite an achievement, quite a process that literally takes so much energy, thought, hard work, and cooperation from not just him, but from me, his behaviorists, and anyone who really comes in contact with him. Because it's as quick as a snap that will trigger this again "danger" response and he acts on that. His body does it automatically. So, to say yes our son suffers- absolutely. He can only expend so much energy trying to physically exist everyday that it all becomes too much. And one of 2 things will happen. He literally crashes into a sleep state. (This BTW is my favorite, because the alternative sucks). Or two, he begins to have behaviors. He begins to be bothered by his environment and blames everyone around him therefore (again this is his survival mode taking over his brain and body) and he's going to "fight" or "flee". Both suck! So when we have a day, that he smiles, is organized in his brain enough to play, to engage with another person, to eat, sleep, focus on a task. Pretty awesome is an under statement. Those days are our rare days. The fight or flight system rules him 98% of the time. But wow that 2% that we know exists inside him, is the most amazing little boy. So intelligent, so loving, so thoughtful, very creative, so talented. That's our little boy- and that's why we surround him with this bubble. Because the bubble is what helps him be him- it helps him be happy. It helps him grow and develop the way children should. It's what he NEEDS! And it helps him be more comfortable within his own body. Those leaks I always talk about- the things external to him, and his world- they only drive him into a hole until he no longer can hide. And he has to come out fighting- at least his body thinks so. If you don't know much about all the diagnoses Autism, Sensory processing Disorder, PTSD, Mood Disorders, ADHD, Bowel disorders. I encourage you to learn more, because the Autism rate only keeps growing- and all children on the spectrum are all so different and unique, and have such different needs. But one thing is common, they will all grow up to be adults. And if we don't help them and support them when they are young, well I know in my son's case- I worry and have deep fears for when he's an adult. Because at age 9 he struggles so much. But one day at a time and our absolute commitment to him - he will continue to makes strides. Tiny baby steps, one moment at a time, sometimes one breath at a time. But we will NEVER GIVE UP ON HIM! That is our promise to him and our family.