I am not sure where I have been. Your school year has come to an end and we are off and running for summer. We have packed your schedule with one on one therapies that vary from Occupational Therapy, Physical Therapy, Speech Therapy, Music/Device group, AAC group, BCBA, and then also behavior therapy sessions that are in home. That consumes most of our mornings Monday through Thursday and I can see how all of the pieces are starting to form together and help you continue to make the progress you need.
For awhile now we have not participated in Occupational Therapy as it was just icing on the cake. It was the therapy that was one too many and the most aversive. We worked hard to make accommodations and modifications for you that allowed you to forgo on the fine motor skills and focus more on following directions, your language, and simply finding your way in life. This summer though it was time to tie in that remaining piece and honestly you have done well. It was the right time. This therapy is also allowing us to finally look at some of the visual aspects and the possible need for more intensive therapy for you to learn how to track and learn to use your vision (which is perfect by the way) appropriately in order to access your environment. You do not track at all, you have a hard time following objects, and your depth perception lets just say is less then desired. Hopefully as we add in this remaining aspect the pieces will continue to slide into place.
We have had a lot of changes recently and it could be the other reason I have been a little quiet, not quite sure where to turn next or if I am making the right decisions for you. Your need for sleep towards the end of the school year was high and I was worried. You were sleeping upwards of 15-17 hours some days and your behaviors were hit or miss. We went to the doctor to see what might be going on and rule out all facts. Needless to say your little body was turned upside down. It ends up one of your medications had gone to toxic levels within your system and had also called your TSH (thyroid) levels to almost double. So, after an ER visit, numerous blood draws, and a scared momma we have pulled you from all medications (of course under doctor guidance and recommendations). Ummmm... yeah.... first time since August of 2010 you have been without any sort of medication and needless to say your body has needed time to readjust.
Coming off the medications you have a spark back in your eyes, I see more of your personality, and you no longer need 15 hours of sleep a day. I am not exactly sure what to do with you yet for an extra three hours every night before bed as you have gone from a 6:00 pm to a 9:00 pm bedtime which you love! Your one on one therapies have continued to remain good and you are pushing through and doing the best of your ability. This has shown us that we need to start from scratch. Due to your impulsivity which includes self-injurious behaviors we still need to look at a low level ADHD medication but I am hoping, lets say praying, that we will not need to look at mood stabilizers again and you can feel yourself.
With this though, you are showing more and more signs of PTSD from your past. Given that you have no medications to help filter and help with the impulses, and you have so much more language I am seeing and hearing so much more that we need to slowly work through. The other day you were slapping yourself across your face and saying "bad boy" (the word bad is never used in our home and never a word you have heard since you arrived in my arms). Then, anytime you become anxious you start pulling your arms and saying "no, no hit... no bathroom... no, no, no... no pee poof... no bathroom.. no" - this occurs even when the bathroom is never mentioned or a thought to others. Given that a great deal of your abuse was in the bathroom I know you are struggling to work through the anxiety and you need another outlet. You are also having a very hard time again in closed rooms or when individuals you are not familiar with close doors.
Next on our list will be a very good play therapist. You still do not have all of the language you will need to actively participate in this therapy but you can start to build a relationship and have a comfort zone for when you are ready to let it all out. Additionally, I am starting to the application process to get you a therapy dog which would be specifically trained to help you in situations when you are overwhelmed. We have a very long road ahead of us but we have made some major gains lately, learned valuable pieces of information, and I am excited to see what tomorrow brings us.
Keep on Truckin Baby
Love
Mom
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