I don't usually talk too much about my personal life on my blog, I try to keep it inspirational for all of my paper-crafting "'friends" out there, but today I am sharing a few feelings. If you would like, feel free to skip my emotional drama, and scroll on down to the card pics! (Don't worry, I won't know, nor will I be offended!)
For those of you who don't know my family well, I have a son with SPD and an autism spectrum disorder. If you are wondering what in the heck SPD is, you can always google it, I had to! After Gage's "official" diagnosis this past spring, I have spent many hours researching and studying about his disorder. I am still learning new things each day as he and I go from appointment to appointment so that he can get extra help in learning how to function, and so I can be better educated about his disorder and learn how to help him be successful in a world that makes no sense to him. I admit, some days I can deal with Gage's disorder just fine, others it becomes physically and emotionally exhausting.
The easiest way for me to explain SPD is that it is a disorder in which the brain is not "wired" correctly, therefore any information that is received through various senses does not illicit an appropriate response. To illustrate, let's say you are driving your car to a particular destination. You have been there a few times, and know exactly what roads to take to arrive there. However lets say that one day you come to a road block. As you try and make your way through the detour you somehow miss a turn. Not knowing where you are, or how to arrive at your destination, you end up lost. This is how Gage's brain often responds to incoming stimuli. There are many things that can contribute to SPD. In Gage's cause it is most likely due to the extensive trauma (drug use, domestic violence, and other unknown stressors) this poor boy suffered while in the uterus of his birth mother, as well as the numerous stressors he experienced while in the care of his biological father the first six months of his life. His brain was always in "survival" mode, thus good "roadways" could never be established because every incoming stimuli was "detoured" to the survival part of his brain and thus this portion of the brain was overdeveloped and the rest of his brain underdeveloped. When Gage was placed in our home, he was able to start working on developing the other portions of his brain. However his brain still frequently "detours" incoming stimuli to the "survival" portion of his brain. He is very intelligent and does very well academically, but he still struggles with any sort of sensory stimuli, especially if he is not the one controlling the incoming stimuli.
Over the past several months I have become very aware of what Gage's SPD looks like, and how he responds to different stimuli. However, it can change day to day depending on what is going on in Gage's surroundings and his brain. One day he may seem "normal" while the next he may go into "sensory overload", or what is referred to being "out-of-sync". So what does SPD look like? There are MANY different reactions and responses that a child with SPD may have, and it varies from child to child. For Gage, there are so many "quirks" that I could write a book! I will share just a few general examples.
First, Gage suffers from gravitational insecurity. This basically means that he doesn't have a sense of where he is in "space". He will have the sensation of falling, even if he is simply standing still. This creates delays in sitting up alone, crawling, walking, as well as numerous other gross motor delays, and can also have an effect on their self-esteem as they grow older and are unable to keep up with other kids their age. Gage also has a very hard time keeping his hands and other body parts to himself. Though this behavior is not socially acceptable, to Gage the benefit outweighs the consequence. He will often touch people and bump into people and things in order to get a feel for where he ends and the other person or object begins. Gage is infamous for what he calls his "knock-you-down" hugs.
Gage also has tactile defensiveness. This means that any "touch" sensation is alarming to him and illicits a survival response. For instance, let say that you are in a crowded room and someone brushes up against you. Because your experiences have taught your brain that this was neither intentional or did it physically hurt you, you simply respond by saying "excuse me". For Gage, the brain pathway leads this sensation to be alarming and thus he responds with the flight or fight mode (a survival response). He may run away crying, or, in most cases, respond by hitting the person. Also, while something as calming as a nice bath or back rub may be to us, Gage can't stand either. Something as simple as a bath turns into a struggle because Gage's brain responds to the sense of the water touching his body as being something noxious. And to add to the battle, his gravitational insecurity makes him uncomfortable tipping his head back in order to get his hair rinsed. We have had to come up with some pretty crafty ways in giving him a bath!
Another of Gage's "quirks" is his auditory defensiveness. Gage gets very easily agitated in large settings where there is a lot of noise, or if there are loud noises. Again, this is because his brain is detouring the auditory messages to the survival part of his brain. When in large crowds, Gage will often cover his ears and yell that everyone is being too loud (even if the noise level is minimal). If the noise does not cease, Gage becomes very agitated. This makes going out to eat difficult. Ironically, Gage will often make very sporadic loud noises himself. If you didn't know better, you might think he had tourette's syndrome. I have learned that he does this because this is a noise that he can control, whereas in a restaurant the noise is unexpected.
Gage also lacks development in the part of the brain where conditioned responses, priming, episodic and semantic memory occur. What does this mean? Gage's brain has difficulty remembering specific responses to specific events, and he lacks the ability to transfer those events to similar ones. For example, a child with a "normal" functioning brain may go down a slide and think that it was fun. The next time they go to the park and see the same slide, they will remember that the last time they went down it it was fun, and so they will probably have fun if they go down it this time as well. They also may be able to transfer that memory to where at a different park they see a different slide, and remembering how much fun they had on the other slide, will think that they will have fun on this slide as well. Not Gage. He is terrified of the slide EVERY time we go to the park. Once I get him to go down, he has fun and then will go down a number of times again. However, the next time we go back to the same park with the same slide, the terror starts over. As you can imagine, this is very frustrating, and makes disciplining very difficult! He also struggles with impulse control, visual hypersensitivity, ocular-motor, and eye-teaming skills, vestibular issues, and the list goes on.
These are just a few things that Gage, my husband, and I deal with every day. Caring for Gage is like having 5 full time jobs, but it is the most rewarding job I will ever have in my whole life! Gage is such a sweetheart, and I love him to pieces! Though we are trying so hard to help Gage's brain get through the "detours" and build new "roads", it is a daily struggle. I am so thankful for my loving husband, and all of Gage's wonderful teachers and therapists who are working so hard with our family. We love them all so much, and are ever so grateful for their support through all of this. I hope and pray that one day Gage will be able to experience a full and happy life without the constant distractions from his SPD. It is heartwarming to know that I am not alone in this, I especially want to thank Gage's thereapist Evalynn who is constantly brainstorming with me in coming up with new and better ways to help Gage, and help me to keep my sanity! I don't know where we would be without her! I apologize for such a lengthy post, but for all of you who took the time to read what life is like for our family, thank you. For all of you who are here for some inspiration, I felt this card to be appropriate to give to my very special little boy!