Summer Homeschooling.

 

I mentioned in my last post that we have been doing some summer homeschooling with the girls. There are many reasons for this, but the main reason is that even though Elsie does not currently need extra therapies beyond what she gets during the school year, she very much needs to continue working on her motor skills, so there is a heavy emphasis on occupational therapy work. SMSers are also typically well behind their peers in math skills, so we are doing a lot of age-appropriate math work. We are keeping things extremely low-key and flexible, not cramming too much into a day so it doesn’t feel like work, and not sweating it if life happens and we don’t get to something that day. We fit things in here and there as we can around naps, play dates, trips to the zoo or nature center, and doctors appointments. Because we are taking a week off after each two-week unit (giving me time to breathe and plan for the next unit), we have only done two units thus far this summer: Creation and Oceans. Next up is Woods/Camping. We are having fun with it all and the girls are so proud of the projects they are doing. And, an unexpected bonus is that I am learning to be more patient, learning how each of them learns best and reacts to instruction, and learning to be more flexible and thoughtful in my plans and parenting. Because let’s face it, this mama still needs lots of character building too!

P.S. Several of the ideas and worksheets came from Simply Learning, a site I highly recommend if you have little ones you are looking for ideas for. 

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Lately. 

School is out and summer is in full swing over here. I am doing some low key homeschooling with the girls. Just enough to keep us focused and busy and interested but not enough to overwhelm any of us  – maybe I’ll post more about it? – and that is helping the summer to speed by. Everyone is growing, healthy and generally happy (I mean. We’ve got a SMSer and a three year old, both of whom are one missed nap away from a major meltdown. “Happiness” is a tricky subject, really!). As I was looking through my phone for photos to post, I realized that this is the first summer in three years that we haven’t been busy with weekly (sometimes multiple per week) therapy sessions for Elsie. What a huge, wonderful thing that is for her and our whole family! We’ve much to be thankful for in this season of life, it’s just hard to stop and remember that sometimes! 

What are you thankful for in the season you find yourself in?

Rules To Live By

Hypervigilence is one of the most difficult things about this life with Smith-Magenis Syndrome that we live with, but it’s one of the things I find most people not living the life understand or even know about. I don’t know how other SMS parents cope, but John and I both have Rules To Live By that are on constant loop in our heads as we go through our days and nights with Elsie. Having to stay ten steps ahead of our SMSer is mentally exhausting, discouraging, and it never, never, never ends. Its even worse when we’re sick (with Influenza strain B, no less). Here at what is hopefully the end of our party with Influenza strain B, I’d like to share the Rules To Live By that have been the theme of our last week (though I’ll grant that other SMS parents’ lists may have many more items than ours does):
1. Do not lay in your bed too long or SMSer will come in and systematically take all of the knobs off of your dresser drawers (because you are not giving her enough attention).

2. Do not lay on the couch or SMSer will come and stand in front of you and pick the scab on her chin where she scratched a hole for no reason, all because she knows it bothers you (because you are not giving her enough attention).

3. In fact, it’s better not to rest at all (this is not a “super fun project” and therefore qualifies as not enough attention being given).

4. Move all essential oils, medicines, thermometers, water cups, soup mugs, lip moisturizers, etc to a high up location that requires you, the sick person, to physically get up and reach for them so the SMSer cannot get to them and destroy, empty, dismember, unpackage, partake of, or otherwise mishandle. 

5. Ignore your other feverish and delirious children calling pitifully for you because your SMSer is in the midst of a(nother) meltdown. 

6. Casually lie to your SMSer as you rapidly smear ointment on her chin every hour or two, telling her it looks awesome (force your feverish eyes from dwelling on the emerging hole there, knowing that any undue attention being paid it, sympathy being given, exclamations of horror, etc, will only increase her rate of digging at it).

7. Clean the kitchen faithfully daily so that the stack of dishes doesn’t come close enough to the edge to tempt her.

8. Do not forget to clear the table of dirty plates after every meal or she may come wake you the one time you forget with last night’s chicken stuffed in her mouth and clinging to her lips. (The crumbs on the floor may be left all week, those will not be touched.)

9. Put away or at least unplug all appliances immediately after using them lest the SMSer burn down the house with, say, the toaster. (Don’t forget to take the knobs off your gas stove, too. Been there, smelled that.)

10. Be calm and cheerful as you spend your days getting your SMSer out of the mail, out of the silverware drawer, out of her sister’s face, out of the refrigerator, out of the trash, and so on and so forth, knowing that any sign of weariness or impatience or frustration will increase her frenzy.

11. Pray that you are allowed 6-8 hours of sleep at night whilst knowing that you will be lucky to get 4-6 hours (divided) on which to get well.

12. Watch as the days keep ticking by and you begin wondering if one or all of you will wind up in the hospital and asking out loud how you will get through this, to which your spouse answers: “we just will. We have no other option.”

Matfield Green, KS. 


A couple weekends ago John, Matthew and I left the girls with my parents and drove into the Flint Hills for a little anniversary getaway. John was sick – we ended up driving back into town one day so he could get to a doctor – but still, it was so good to rest and relax, to stay in a place surrounded by beautiful, fragile things and not be on hyper-alert day in and day out for the destruction of said beautiful and fragile things!  We celebrated six years of marriage this year. Six years! Three babies, four moves, and way too few hours of sleep later, I still say it’s been a good six years. I’m glad he chose me. 

I didn’t ask for this.

So often the phrase “I didn’t ask for this” runs through my head regarding Smith-Magenis Syndrome in our lives. Because I didn’t. I’m not one of the people who would willingly adopt a special needs child. I’m the one who, when a special education teacher I worked with in my single days told me I should go back to school for a degree in Special Education, not only disregarded her advice but I quit working in the schools altogether. Not only did I not ask for special needs in my life, I ran from it. It’s too scary. It’s too unpredictable. It’s too hard. I DID NOT ASK FOR THIS. But last night as I bathed Elsie following the first calm family dinner we’ve had in a long time, I looked in her eyes and thought, “maybe I should have”.  Maybe I should have desired the wisdom and strength that will someday come from this hard road. Maybe I should have desired to be taught the hard lessons I am learning from this.

Elsie is a daily object lesson for me on God’s love. His love remains, steadfast and sure, even when we are unloveable. When we fight back, kicking and screaming and abusing Him. When His heart is breaking as He watches us abuse our own bodies, His love continues. And that’s the kind of love He is asking me to have for her. She is a lesson for me in forgiveness. Because the only way we can get up and get through another day together is for us to forgive each other for what happened yesterday and focus on today. She is a lesson for me in endurance and finishing what we start, no matter how hard it is. She is a lesson for me in grace and mercy and sacrifice, of celebrating the small victories and letting go of the big losses. So many lessons I didn’t realize I was signing up for learning when I brought this girl into the world, but here I am learning them just the same. The lessons I should have asked for.

A look back.

2016. What a year! This year has held the lowest of lows for us with the diagnosis of SMS and some of the changes we’ve seen in Elsie, but there have also been some incredibly bright and joyful parts with the birth of Matthew and watching Katie blossom. This year has forced John and I to grow in ways we never imagined, our love for each other and our children has been tested, but grown and deepened. Am I thankful for all we experienced in 2016? In a way, yes, and I’m sure I’ll have a greater appreciation for it in years to come. But I’ll be honest: I’m hopeful that 2017 is much more uneventful for our family!

A good hour.

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Elsie and John are on their holiday break from school and work, so yesterday we bundled up and went for a walk at the nature center a short drive away from our house. The fresh air, exercise and break from routine were good for all of us. Every time we get out and do something like this I tell myself we will do it more often, but the reality of three kids in diapers, three kids not yet independent in dressing themselves, and the stubborn-as-a-mule tendencies of the oldest make getting out of the house at least an hour-long ordeal…and that’s when I have John’s help! I often have to remind myself of that when I inwardly berate myself for not providing more experiences for my kids and for not taking better care of myself physically, mentally and emotionally. Those things seem like luxuries right now. But that good hour in nature sure does make me want to find a way!