Saturday, November 23, 2013

Question and Answer Post!

Here are the answers to some questions some of you have left in the comments over the past several months! I'm FINALLY getting around to answering those questions!! Also, if you've emailed and I've not responded, I'm the worst email responder in the history of the world, so I'm sorry! I usually read an email on my phone with intentions to go back to the computer later and answer it, but that usually doesn't work so well for me! I'll try to answer some of those here as well! It's quite a long post, so if a specific question doesn't interest you feel free to skip right over it!

Q: Do you think it's possible for both parents to work full time while having a child with special needs?

A: Yes, most certainly! When we only had Zoya, we were both working full time. I scheduled half of her therapy sessions during the day when I was at work and the other half after work. This helped a lot because therapy wasn't overtaking ALL my time with her, yet I was still able to take part in her therapy sessions and be an active member or her therapy team! If we needed to travel for any medical appointments, I tried to schedule them during days in which school was not in session. Shawn's schedule allowed (and continues to allow) some daytime shifts and some evening shifts, so that allowed us to only need an in-home sitter for Zoya for about 15-20 hours a week! After we brought Mila home, the plan was for me to go back to work. With her being so fragile and sick, I decided to take the remainder of that school year off. The next school year I still didn't feel that she was ready for me to go back, so I asked for an unpaid leave of absence and was denied. We had to make the best decision for our family at that point, which was for me to resign from my teaching position.

After I was denied an unpaid leave of absence, we assumed there must be a bigger reason for that, so that played a large role in our decision to adopt again, while we knew I'd be home full time and able to give more of myself to another child! After Sofia came home it was clear that I'd not be returning to work anytime in the near future :) I don't feel, currently, that I could work outside the home full time and give the girls 100% of what they need at this stage of the game, but every family is different! Zoya attends preschool from 9-12 M-F which requires drop off and pick up, the two little ones have MANY in home therapies until age 3 when they transition to preschool age and receive services at school, paired with the MANY doctor appointments and specialists....almost every day of our week is scheduled solid, and I can't imagine how I'd get all of that done if I was working. We felt our girls needed me to be more fully available, and we are very grateful we were able to afford to do so, financially speaking. The cost of child care, had I gone back was a big portion of my salary, so for many reasons we decided it was best for our family if I stayed home with the girls! It has been the most challenging, yet rewarding "job" of my life! I'm able to use my special education teacher skills on a daily basis, without having to worry about meetings and paperwork! As the two Littles get a bit older and are in school for part of the day, I'd LOVE to find a part-time job, if it seems right for our family at that time! If you're thinking about adopting a child with special needs and worried about not being able to work full time, there's really not one answer I can give you. A lot depends on the age of the child, their needs, how much support you have locally, the extent of therapies and medical appointments your child requires, and what is best for YOUR family. There's no right or wrong answer, and just remember, any ORPHAN would be far better off with a loving and attentive family (working mom or stay at home mom) than they'd be wasting away in an institution, and THAT is really the bottom line!

Q: Has Sofia had her tonsils/adenoids out yet?

A: Sofia's doctor decided that her apnea was mild enough at this point that he did not feel having the surgery was necessary. We will have her adenoids xrayed at her next appointment and if they seem large, we will make a decision about having her tonsils/adenoids out. After watching Mila struggle so greatly with the procedure, and then seeing Zoya sail through it with no problem, we're more inclined to wait a year or two since her apnea is only very mild. It was much easier to coax Zoya into eating/drinking/staying hydrated than it was to reason with a barely 2-year-old!

Q: What does a typical 'day in the life of a Bee' look like? I can't even imagine all that you do between morning kisses and bedtime books. And you look so darling in every picture I've ever seen! Even the one with the foils! So how do you do it all?

A: Well today we fit two hour-long therapy sessions, a transition meeting for Mila, and 2 classroom observations for Zoya (parents were invited to observe their children learning at school today but of course the window we were given was right when everything else was happening, but we made it work!) all in the span of 2.5 hours! I designed my own planner with a column for each member of our family, and without that I am seriously LOST! Most days I only know what is happening THAT DAY and don't even worry about the next day until the evening when I check my calendar to see what the next day will bring! I am so blessed to have an AMAZING husband who plays an extremely active role in therapies, appointments, and PARENTING in every way possible! We also have several other really supportive family friends who are always willing to jump in and help out when needed! Here is the calendar I designed to fit the needs of our family! Ahhh glorious blank calendar! HAHA! I printed out the pages myself and took it to Staples and paid under $5 to have it bound!

Most of our days include 1-2 hours of formal therapy for Sofia and Mila (in home), working on goals with me, usually 2-3 medical appointments a week, dropping off and picking up Zoya from school, trying to eat healthy meals, and spend time enjoying one another as a family! On our busy days, I do feel like we are constantly on the go from sunrise to sunset! On Tuesday, for example, I took Mila to the mall for her PT session (usually at home but we decided to try a new environment to work on her walking) from 9-10, rushed home, where Shawn had taken Zoya to school with Sofia in tow, and was holding down the fort with Sofia. We got a quick snack and the little ones had a quiet time in their rooms (much needed for ALL of us) and then I headed out the door with them to dance class from 11:15-12:45. While I was gone Shawn picked Zoya up from school at noon. When we got home, they ate lunch and went down for naps. AT 1:45pm, Zoya and I had to leave for a meeting to reauthorize her behavior specialist services...ran back home grabbed a bite to eat and then left again for a 4:30 nutrition appointment, followed by Zoya's dance class from 5:15-6:15. Not gonna lie, that night we ordered pizza for dinner :) So some days I feel like we're way overscheduled, but not every day of the week is like that! Shawn's work schedule allows us to tag team quite a bit and be in multiple places at one time! We've also taken whole weeks off of therapy for "therapy breaks" and not felt one bit guilty about it, because sometimes, you just need to do that!!

Honestly I think the most difficult part of our days, for me, is just getting out of the house! Brushing 3 heads of girl hair (1 who is overly tender headed) and anywhere from 3-6 ponytails or braids, getting them dressed, brushing teeth, potty and diapers, putting their sure step orthotics on (3 pair) and THEN their coats and hats...then loading everyone up into their 5-point harness carseats....many times just to drive up the road to school, unload the wagon, unload all 3, drop Zoya off, then load the other two back in, just to unload at home again.....I get tired thinking about it! If it's a day Shawn is working early (half the week) then I'm solo and I'm never on time anywhere anymore, I've sort of given up on that ever happening any time soon! And if we're going somewhere further away from home? The drinks and snacks and toys to keep them occupied, diapers, extra clothes, oh it's like packing for a week long vacation every time we leave!

I shared on another post the DAILY ACTIVITY PLAN I use to make sure I'm completing therapy goals/activities, etc. that need to be done with the girls. I've since tweaked that a little bit after checking out what my friend Deanna designed to track her child's goals and it's been working great! I have one page per week/per child with goals listed and a place to check them off daily. I also use it to write notes about their progress or areas of need that I see as they arise. I've never operated well on a strict schedule, so we try to adhere to scheduled appointments and then just fit everything else in depending on how the girls are feeling when!

Thank you so much for your sweet comment about me always looking darling, because I certainly don't always feel darling!!! Since becoming a stay at home mom, my wardrobe has changed DRASTICALLY. These days I mostly wear sweatpants and tshirts and hoodies....and WOW I'm not sure I could ever go back to living any other way! HAHA. I DO put jeans on sometimes, but mostly wear my sweats to school drop off/pick up, the grocery store, etc. It only makes sense because I'm on the floor with the girls most of the day or doing heavy lifting of children in and out of the car multiple times a day, or physical therapy, or dance....all those things are like working out, so I dress accordingly for my job! With that said, I almost always try to at least brush my hair (even on non shower days LOL), and put a little makeup just makes me feel a little more like I can tackle the day. Taking those 5-10 minutes to myself in the morning also gives me time to mentally prepare for what is likely to be a non-stop day of running around! I do get dressed up for the rare, yet special, date nights with Shawn, because I think he's probably tired of seeing me in sweatpants he deserves to see me take the time to get dressed up for him, and because it makes me feel a little less like mom and more like a wife!

So how DO I do it all? I DON'T! There are PLENTY of days that I fail completely as a mother, or as a wife, or both! I just don't give up, though....I wake up the next day and give it my best shot and try to do a little better than the day before-just like all mamas do! I try not to give myself guilt trips (as a mama you know that's nearly impossible). My house is almost always messy, but I decided after the second child that happy kids were more important than a clean house! Some days I truly have to sing "just keep swimming" in my head over and over and over. Some days my goal is just survival, but the days when the stars align and everything goes as planned....those days are magical! Shawn is totally awesome and way more of a morning person than I am, so he gets up with the early birds while Zoya and I catch a few more zzzzz's (but still get up pretty darn early if you ask me haha) that is very helpful too! He KNOWS by this point in our marriage that Me + lack of sleep = TOTAL TRAIN WRECK and not worth it! ;) And of course, I rely on the Lord to get me through most days....and some days that is on an hour to hour basis! I find that when I complain less out loud throughout the day, I can tackle life much better! And writing....writing has kept me sane and is an awesome outlet for stress!

Q: Have you ever considered doing a youtube channel filled with videos on therapy how-to's? I'd love to see you in action - I've learned so much from your therapy posts, and it would be nice to SEE you doing some of those things instead of reading about it. 

I'd LOVE to be able to share some of my strategies in a video, but have never actually thought about it before right now! HAHA! I will have to ponder that...I guess the hard part would be trying to video and work at the same time....the video camera on my phone is not so good these days, but I'm in need of a new phone so I'll consider this for sure when I have a better video camera! I have a better idea though, why don't you come to visit?! I bet you'd get here fastest if you rented some snow shoes and treked your way over though (that would only take, what? a few months to get here?).....we're getting some blistery weather today, and maybe you are too?

Q: Is Mila still posturing her head after her eye surgery? I know you said the surgery didn't seem to work, but in some pictures it seems like the posturing has improved!

Yes, she is :( For those that don't know, Mila had eye muscle surgery in August. I wrote about the purpose of the surgery HERE. It seems to have slightly improved, but only very slightly from what we can see. Check out the pictures I just posted HERE (pictures #3 and 4) and you can see how bad Mila's posturing still is. She tips her head back with her chin up and gazes downward in order to see more clearly. We notice it mostly when she is trying to see something in motion (television, person moving, etc.) far away. Shawn was behind me acting silly to get them to smile for the pictures and he was moving from side to side, so that's why those pictures show a good example of when we're seeing the posturing. I notice it as well when she's doing table activities and I really don't think she's always seeing great, even with her glasses on. We're still playing around a lot with positions of materials on the table and the way we present things to her to see if that makes a difference. She has an appointment on Tuesday to discuss options for a second surgery....BOO! The good news is that her physical therapist does NOT think it is affecting her walking at all at this point, so that's good!

She also seems to be very afraid when entering dim hallways or places such as tunnels. She refuses to go through tunnels and now that she's walking more I've seen her stop dead in her tracks on our way to the bathroom if the bathroom light is not on...she braces herself like she thinks she is going to fall, or she'll try to grab onto something really I'm not sure if that's a vision thing (can you imagine me bringing that up to the eye doctor Tuesday...."hey umm I have this concern that my kid can't see well in the dark".....) but seriously, there's something not quite right and I'm really starting to think her vision is affected quite a bit in dimly lit areas....anyone know anything about this?! I mean we don't make it practice to walk in dark places often so I don't have a ton of examples to go with here, but most of them involve dark places that are somewhat narrowed or enclosed (doorways, hallways, tunnels...her OT and I even tried getting her to play under the table and she was scared)....maybe she's claustrophobic?! HA! Any ideas?!

On that note, I think I'll save the last two questions for a second Question and Answer post! These two questions really deserve a post of their own anyways because my answers are so involved (as if these ones weren't right?)

Q: Would you be willing to share a bit more information on Zoya's education? Have you been through an IEP yet? 

Q: I would be interested to hear your plans for Mila's education since she is the next in line for school and is obviously a different child than Zoya. 

1 comment:

  1. Your kiddos? Adorable! I'm an adult with strabismus (Duane Syndrome)...I can only tell you how it feels for me. If I'm looking at something bright, a hallway, looking at the computer or iPad, only one eye will contract and the other stays dilated in the dark. If I change suddenly to the dark, it truly feels like one eye is "blind" because it takes longer to adjust to the change in light. It took me until I was in my late teens to figure that out. Could be something similar for your girl.