Being a special needs parent is not for the faint of heart. However, one doesn't know that until that person is living in the midst of it. Some people who are not special need parents don't understand this, and their judgmental attitudes and criticisms do not make special parenting any easier. I have never had the courage to speak up to one of these people, who I am sure think they are trying to help, but when I do get up the courage, I would love to respond, "When you have walked in my shoes for a day, then you can tell me what I should and shouldn't do!"
For those of you who are curious about the struggles of a day in the Russell household, I'd like to share with you my day today (Wednesday, June 4, 2014), which is by far not the worst day ever, but also not close to being one of the best.
Background information: Tim has been out of town since Sunday. His absence is always a major anxiety provoker for Joshua and subsequently David, who is afraid of what Josh will do as a result of his anxiety (unfortunately, David has been severely traumatized by witnessing a violent attack Josh made on me when he threw a shelf at me injuring me and bringing me to my knees in pain and tears when Tim was away once). I usually work Tuesdays and Wednesdays and had to ask for both off this week since Tim wasn't home to get the boys on their buses. However, at the end of last week, I got asked to work today if I went it after getting the boys on the bus since they were able to get the night nurse to stay until I could arrive.
I woke up at 5:30 a.m. to get a shower then eat breakfast while having devotions before I woke up David at 6:10 to get him ready to catch his school bus. I got David out of bed and gave him his stomach medicine (the med should be in his system for 30 minutes before food but due to his early mornings, only ends up being in his stomach for 10-15 minutes before he eats breakfast). I put the boys' lunches together (they make them before bed the night before, so I just have to put the refrigerated items in the lunch box with the ice pack), and packed my own and finished blow drying my hair while David finished eating. I put an anxiety blend I made up for David with essential oils on David's neck to help him during this heightened period of anxiety and Owie Spray on his face (another essential oil spray for scrapes, cuts, and bruises). [Josh attacked him only a couple of hours after Tim left on Sunday leaving David's face a bloody mess thanks to a mean cut that went from his nose to his bottom lip.] I got David to the bottom of our driveway at 6:50 to catch his bus a few minutes later.
I got back to the house to get Josh up and ready for his bus. I hovered over him and helped keep him on task so that he would be ready for school without any significant melt-downs or disruptions to the routine. I ensured that he took his morning meds and used his mood blend essential oil and focusing blend essential oil. All the while, I was reminding him of what to do in certain situations and how to respond and the need to use his words to let people know how he was feeling and to use his calm down spot when needed, and assuring him that he would be ok if his aide was out again for the third day in a row and telling him that today would be a great day, and don't forget to pray and do all things through Christ's strength. After some deep pressure hugs, we walked out to the bus stop with 3 minutes to spare and enough time to remind him once more of what to do and that today would be a great day while I gave his back a last few scratches fulfilling his sensory need for the morning.
As Josh's bus pulled away, I got in my car which I had left at the bottom of our driveway and drove off to work after texting the nurse to let her know I was on my way. I took some time to thank the Lord for allowing the morning to go so smoothly and listened to my favorite Christian music playlist to help keep my heart where it needs to be. I arrived at my patient's home, received report from the nurse and began my work shift. Two hours into my shift, I saw that Josh's school was calling me. Normally, I can't answer my phone during work, but because I am the only contact person available in town, I had to answer. [Every time I see that it's his school calling me, my heart stops for a few seconds in dread for what the call will be about this time.] This time, it was Josh's principal calling to let me know of an issue that happened in music class yesterday and Josh's increased agitation over his aide being out the past two days and having a substitute aide working with him. She told me she was going to pull him out to talk to him about the incident yesterday then get back to me. An hour later, she called me back and told me that she is suspending Josh for the day as a result of an incident that had happened on his bus on his way home from school on Monday (she had just been made aware of that situation) and that I needed to come pick him up. I explained that I couldn't leave my patient and that my husband and in-laws were all out of town and that the only other option I had was to call people from my church whose numbers I had in my cell phone but that I couldn't make any phone calls until I put my sleeping patient, whom I was feeding a bottle, down in her crib. That gave me enough time to process everything and decide that this consequence and reaction was not appropriate for Josh, his diagnoses, or for the school, so I called my case manager to discuss the situation with her who advised me, after speaking with her supervisor to call the school back and share my valid concerns. I then call the school and speak with the director of special ed for the district who understood and agreed with me and said she would think about the things I shared, speak with the principal, then call me back. An hour later, I got the phone call telling me that Josh would have an in-school suspension for the day, would not be allowed to ride the bus for the remainder of the school year, and would have access to individualized instruction outside of the normal classroom for any indication of anxiety/anger/distress for up to 6.5 hours/day for the rest of the school year. I made arrangements for him to stay in the office until I could get to the school 15 minutes after school dismissed once my work shift ended.
I arrived at the school, had a meeting with the principal and head of special ed then spoke with Josh and arrived home just as David was getting off of his bus and to find Josh's TSS waiting on our door step along with Josh's behavioral specialist. In the meantime, Josh was really upset about not being able to ride the bus anymore and David announced that his belly was really hurting him. I bring them both inside to deal with both of them and let the therapists inside so that now, 4 people needed my time and attention all at once. I had David rest, the TSS took Josh, I signed what I needed to sign for the behavior specialist so she could leave, then I talked Josh through his emotional meltdown, got David his upset stomach essential oil blend, helped David with homework, went through both boys homework folders, helped David practice the violin, checked in with Josh and the TSS to make sure his piano practice and other responsibilities were being done, discussed the schedule for next week with the TSS, then frantically realized that we needed to leave in 18 minutes for Josh's 6:30 piano/voice lesson, and I hadn't even begun any dinner prep! After frantically searching through the refrigerator and coming up empty with enough leftovers for everyone, I made a fast change of plans deciding to grab fast food (gag) on the way to the lesson all the while hoping that this sudden change wouldn't send Josh into a violent meltdown.
We said goodbye to the TSS and rushed out the door. On the way, I put on my soothing Christian music and applied my Serenity essential oil to myself to help calm my frazzled nerves and muscles and talked the boys through the plan to get dinner and to Josh's lesson in time. We got the food with only a little stress/chaos of keeping Josh with him and focused and managed to get to his lesson only 5 minutes late. The lesson was a little chaotic with having to jump in a few times to correct Josh or do something for him then trying to keep David entertained in a game of Clue while I tried to quickly finish my dinner. By the time the lesson was over, David's belly was hurting more (not surprising considering none of us are used to fast food), and I was beginning to get a stomach ache as well from my food. We got back into the car and drove home, while I updated Tim on our day and discussed the plan for getting home, making lunches, and getting ready for bed with the boys. Once home, the boys made their lunches while saying "goodnight" to Tim on the phone. The bedtime routine surprisingly went smoothly without any glitches, and miraculously, no prompts for Josh (he was motivated by being able to read if he was ready and David was still getting ready)! I got out clothes for the boys, ensured they had taken all of their medicines (12 different ones between the 2 of them), had them apply their oil blends, prayed with them, sprayed their pillows with the Lavender Pillow Mist I made to help them fall asleep, and turned out the lights. I had to return to the room to give David a bucket in case he threw up and remind Josh of light's out rules then a second time go in and remind Josh to not kick the wall (he was feeling anxious/excited about his field trip tomorrow).
There has been silence since which is great since while I was helping them get ready for bed, I was texting back and forth with the behavior specialist about problems with the updated treatment plan, and as a result, I had to send out an email to my case manager and the manager of wrap-around services. After that, I just needed to unload everything in my brain, so hence, this very long blog post. Now, I can go to bed having got everything off my chest. If you are still reading, kudos to you, and thanks for caring to understand a day in my life.
God's grace has been sufficient today. Even as I write, I realize how so many parts of today could have been so much worse. I am going to bed tonight praising the Lord for the strength to keep one foot in front of the other and for His mercy in preventing all of the melt-downs and disasters that could have happened today. Another day awaits, and I have confidence that God's grace will be sufficient in it as well.