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I am back...at least for the moment.  I figured it was about time I take the extra 15 minutes to check in and try to keep things interesting.  However, it seems my life has lacked a lot of things interesting lately. 

Being a working/"stay at home"/homeschooling mom has been quite the challenge for me lately and I basically just feel like I am constantly fighting a mental battle about where I should be, and what I should be doing.  When at work trying to get things done, I get caught up late and I feel "I need to be at home working on school".  Then when I get home I have things to finish I didn't do at that office, the phone is ringing constantly all through the evening, I have household stuff to take care of and oh yeah...that homeschooling thing too.  Did I mention we also have three co-op classes, and 1 field trip a week?

Not complaining...just sharing my daily life.  I am grateful for my job.  Is it ideal? No.  But none-the-less it gives us an income that we surely can use.  This has never been an easy part of my life to navigate.  I always second guess my decision and it seems I am always struggling with a hint of guilt.   My employer could surely use and would love to have me full time, not to mention the extra full time income would be AWESOME for our family.  Then on the other side of the coin I feel that I shouldn't even be working part time.  Money is not the answer to everything and we can make ends meet with one income.  Because I work, even part time, I often find it hard to keep up with homeschooling and I always fear I am not doing enough.   For now, it is what it is! I pray for the energy to keep up the pace, I pray for days of cooperation and a "whole" daughter, and I pray for the knowledge and ability to keep all of my current responsibilities juggling smoothly.  All of these prayers have been faithfully answered thus far so I will take it as it comes!

As for Olena, she is doing awesome.  She learns like a sponge and obviously LOVES reading.  It is common to see her grab a book, sit down and dutifully read it over and over until she masters it.  In one week she taught herself how to read 3 Mo's Nose books that I ordered for her on-line.  They are not even geared towards early readers for example..."Red strawberries are plump, delectable, and bursting with sugary juices."  She would figure out all the words and then come ask me what certain ones, like delectable, meant.  It was amazing because the entire week she completely engulfed herself in reading and learning what the words meant.  btw...I know a few of my blogger friends have children with sensory needs.  The Mo's Nose books are a great tool.  Olena has a strong drive for scent so these really help to meet her needs.  Word of warning, roll down the windows while in the car.  Once she got done going through the books 100 times during our hour drive we were both woozy from all of the aroma therapy.

I haven't spoke too much about Olena's and her "challenges" lately. To be honest we have been very lucky in that we haven't been faced with many new issues or concerns. However the time has come where we are once again finding that we are dealing with "episodes" more frequently.  Episodes are not easily defined, but to help you understand; basically when Olena is feeling overwhelmed or her sensory needs are not being met she will "act out" in various ways.  Sometimes she will break out into an obnoxious uncontrollable laughing fit. She may start to become very active such as running fast continually around and around, jumping, climbing.  There won't be any "purpose" to her action, it is almost robotic like she is determined to burn the energy. She has a few other quirks that signal us to her needs such as rubbing her hands together, making humming noises and smelling everything.  When she is attending OT, Theresa teaches us different techniques which we of course carry over into our every day life. We go to OT and practice this "sensory diet" for about 6 months.  We get her to what I call her "whole self", we get discharged from OT and we can maintain this for about 6-8 months after therapy ends.  So basically for about a year we can help her control herself and help her to recognize her own needs.  But after that year, it's as if she grows out of these techniques. 

I took some time to go back through her medical journal. The files I keep charting her OT, our appointments, concerns, etc and sure enough for the last five years - just like clock work we are continuously coming full circle.  Winter/early spring OT, late spring/summer no issues, late fall she starts to decline. This time though, we have decided to tackle it from a different approach and it is another one of my many prayers each night that I am doing what is best for her.  I have enrolled her into a year long therapeutic equestrian class.  Basically horse back riding for children with special needs and cognitive disorders.  I did a lot of research, received tons of fabulous information, and she absolutely adores animals.  I figured it would be a perfect "substitute" for OT.  That paired with a few changes we are really focused on making around here should give us a great outcome...at least I hope.  I did a lot of thinking, and I want her to learn about new "natural ways" to meet her needs.  I am not sure if as an adult she is going to want to wrap herself in a tight blanket burrito, lay in a bean bag and listen to classical music on her headphones every time she feels overwhelmed.   Obviously as she grows, it is very likely she will carry some of these challenges with her into her adult life.  I don't want her turning to medications, or risking the use of drugs to deal with this.  If she is aware and has the knowledge and power to tackle these challenges she will be able to accomplish anything.  She is perfect in every way.  She will surely be independent and extremely intelligent, I have no doubts about that, but the fact of the matter is, that she suffers from prenatal alcohol exposure.  That is the truth, there is no candy coating that.  She also shows many signs of FAE.  None of this tags her as incapable of anything, but it does, as her mother, make me worry about what she may encounter down the road.  I can't drive myself crazy with the what-ifs so I feel my best plan of action is to continually teach her different ways to handle any roadblocks and/or discomforts that come her way.  I love this girl with every cell in my body, and I want nothing more than for her to love herself just as much. 

Comments

Anonymous said…
Don't second guess yourself Christina - You are doing a great job and you are an amazing mom!
Tonya said…
Somehow, the last time I read this post, I missed the entire second half!

And I thought I had already commented on the first half. Must had had a computer glitch. My puter does that sometimes when I try to leave a comment.

Anyway, that is amazing that O is reading "Red strawberries are delectable"! Lyra is still on three letter soft vowel words and only barely interested in reading.

Also, I'd be willing to bet that equine therapy will be really good for O. Part of the reason you may be seeing a decline in winter is because she's not outside and as active doing sensory things then. In summer, kids run barefoot, roll around in the yard, play in the sand, swing, you name it.

Anyhoo, you've not updated for a month! hint hint. Hope y'all are having a wonderful holiday season. We miss you guys! Hug!

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