Not to beat a dead horse but when I came down sick with this, what I have self diagnosed, sinus infection- I took a pseudo internet break. I haven't turned on my computer since my last blog post. Now... the reason it is pseudo is because I still Facebooked and Pinned from my phone. Oh yeah and Instagrammed. It was nice to step away from the computer for awhile. I sit in front of two alllllllllll day at work. Ok, two monitors. This little break had me thinking a bit. I think I am going to delete some of my apps. Maybe. I find that even without a computer, I am still too hooked. It steals away precious time I don't have and I really don't need to waste it. I find myself mindlessly checking for updates without any real purpose. I did, however, find that by Monday, I was checking less often. You can always tell when I am bored or procrastinating a lot- I share a lot of crap on Facebook.
I feel a thousand times better but I still have a lot of pressure but better than I was! Yay!
So, a few months back I did an interview with a local organization who publishes resources, articles, etc. about the special needs community and services. This group employs parents to help other parents. When Emma was shaken, our world was turned upside down. Those with typical kids will get their kids enrolled for school, have their annual well visits, have a sick visit or two, see a dentist and have extracurricular activities and sports. Well, our lives are like this: enroll our kids in school, have IEP meetings, Day Treatment and Training After school and summer programs, we have our annual well child visits plus routine follow ups with a buttload of specialists: neurologist, neurosurgeon, orthopedic, physiatrist, psychiatrist, opthalmologist, and I know I am forgetting some of ours. I always do, haha. Oh and a dental visit for Emma isn't typical- she has a shunt in her brain which means that any time she goes, she has to be on antibiotics to prevent bacteria from getting released into her shunt. We have daily medications- Emma's are 75 mgs of topamax and 150 mgs of Carbatrol twice a day. That's a high dose and it's to prevent seizures. She has an EEG due this year. She gets botox injections every 4-6 months in her arm. She has to get fitted for leg braces (AFO) and hand splints. I have to watch for signs and symptoms of a brain shunt failure. She is delayed cognitively. She's beautiful. She has therapy three times a week at 7 AM- Physical, Occupational and Speech therapy. This little girl starts her day at 5:45 AM every school day. She gets up for therapy, she goes to school, after school she goes to a program (Day Treatment and Training at United Cerebral Palsy) after school that ends at 6 PM and she doesn't get home until nearly 7 PM. That's a long day for a 10 year old and she doesn't complain. She's always happy and is my ray of sunshine. Oh and every three months, I have to meet with her Department of Developmental Disabilities support coordinator to keep her services in place. Let's also add that I work full time + will be starting up my part time supplemental instruction lead position again soon + working on posting stuff into my Etsy shop. Oh. Did I tell you that I am a single parent? I am 100% single parent- there is no father in her life. I do this on my own and I do the best I can. I need support from time to time. I do get exhausted but I have no choice. Did I also say I love her? I can't imagine my life without this chaotic shenaniganizer.
So to my point... here's my interview for Raising Special Kids Arizona
Don't forget to check out an interview for Raising Arizona Kids Magazine
I didn't do a music post on Monday. Hey, it was Labor Day after all and I had a Law and Order SVU marathon to watch...
Ladies and Gents- TORI AMOS! Gods... I love her. I know what I will be listening to when I am driving to work today :) Enjoy!
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Wow this post was very touching! I worked in Special Education for many years and i know how tough it can be do have the IEP's therapist, consults, ect. And that is just the school part, i can't imagine how hard it must be at home. My hat goes off to you and you seems like a wonderful mother :) I really enjoy following your blog!
ReplyDelete~Victoria
simplyanchoredblog.com
Hi Victoria,
DeleteThank you so much for your kind comment. I can imagine working in SpecEd just how much work goes into it. It's not an easy field to be in but I hope in the end it is rewarding. Most, thankfully, who have taught my daughter have been wonderful and caring.