My Refuge

"In every walk with nature, one receives far more than he seeks."  ~ John Muir

 

 

Full disclosure: I am not really a nature girl.  I think it started with the girl and ended with the allergies. I was taking Benedryl every 4 hours by 8 years old to survive ragweed season.  The southern doctors tell me it is stronger in the North (where I grew up), which explains why I quickly shifted to all the greenery in the South (that was not in the north). Claritin did not exist, or was not approved for children, to the best of my knowledge.  August and September were not fun.  The only way for me to survive was to stay inside with windows closed, preferably air conditioning (although in Michigan, I remember open windows and fans, not AC), and a good book.   So the outdoors and I had a tenuous relationship at best. 

But then, God gave me this journey. This beautiful, hard journey of parenting. Parenting with special needs. And I learned, after years of drowning, I needed a refuge. A place that was respite from the weariness and stress and a place I could shut out the noise of the world.  We moved last year, and this (below) has become that refuge, that respite place for me.  I wasn't really planning on it, but amazingly enough, the kids do not interrupt me on the screened porch often. God and I meet in the mornings, with my coffee in hand.  It is 95 degrees out lately, so for now, it is ICED coffee.  The squirrels rustle the leaves. The birds sing.  At night, I read, or in this case, blog.  The crickets chirp. The frogs ribbit. The grasshoppers sing. And God gives me peace here. It is quiet. There is room for rawness and reflection and confession and healing.  I think that is the part John Muir was talking about above. God gives us more than we seek. I am thankful.

"Have mercy on my, my God, have mercy on me, for in you I take refuge.  I will take refuge in the shadow of your wings until the disaster has passed."  Psalm 57:1

Joy in Delayed Blessings

Last year, LJ received a Minecraft Mod online class for his birthday. I don't really understand it all, but he can create mods to use in Minecraft, his favorite game. We actually gave it to him to encourage learning online and develop a life skill (learning Java) that he could later use in a career. Life skills are big in our family, especially since he struggles with executive functioning on an almost daily basis.

However, last year, Lucas really struggled getting through the intro part, where you learn how to copy and paste code, etc, etc. At the time (and I still am, albeit moderately better), I was busy chasing down a 2 yr old who had just stopped napping AT ALL and becoming pretty much a crazy mom. Did I mention we were also waiting on our house to finish getting built and all 6 of us were squeezed in my parents' house?  And LJ was also getting multiple medical procedures as we tried to help him?  Yeah, last fall was crazy. I was crazy.  So we stopped trying to get through the class because I had nothing left. I could not sit there and watch him cry and get frustrated. This was 2 months before we discovered he had epilepsy.  And then we moved and I forgot about the program for 6 months. Because that is what moms do.

Last week, nothing made LJ happy. He was bored. The chores were done, and it has been crazy hot here. And AHA!  I remembered! We have the Minecraft mods!  And it is school...on the computer! #momwin  So we started watching the intro...again. Today, we got through the intro, and LJ was so excited to get through it, he wanted to create a mod RIGHT AWAY.  (Keep in mind, I use this term without really knowing what it means!)  The look on his face tonight after creating a diamond sword that has blood (shudder! What did PBS teach him?? Seriously, we can barely watch non-cartoons!) was priceless. He was proud and happy and excited!  It was such a joy to see how the epilepsy meds have helped, and how the diagnosis has helped him get to where he is.

Sometimes, we have to go through the suffering to really see the joy in life. It is these moments I live for, because they are rare.  Delayed blessings are a gift because you receive a greater depth of understanding of what the blessing is. You know what it is like to be without the blessing. You know what the suffering looks like. And you soak up the joy when it comes. God is good.

The Way of the Giant Sequoia

Last month, my husband and I took a rare trip out west for his 40th birthday and our 15th wedding anniversary coming up this year.  We went to see the Giant Sequoias.  They are awe-inspiring, amazing works of God.  They make you feel infinitely small.  I have never felt more humbled by nature than standing by these gorgeous trees that are up to 40 feet in diameter.

 

The way the Giant Sequoias survive is only by a specific squirrel scattering its seeds, or by fire.

Fire has come back into our lives. 

There is a post I started a few weeks ago about the Year of the Rain.  It got deleted, late at night, after some computer glitches, and I miss the perfection of the first write.  This would be a sequel post if I had that post.  I hope to go back and re-write it, albeit less inspired, less perfect, but that is not where I am today.  I wish I had it written, so you could know we have had good days this year.  Lots of joy.  Days of peace.

Today, I am in the midst of the mixed blessing that is epilepsy.  Last year, I wrote how hard things were.  There are several blog drafts that are unpublished because I think they are probably harder than what people want to actually read about.  Suffice it to say, last year was difficult.  The single joy of last year was the diagnosis of epilepsy.  We had hope!  We had an answer we could actually treat, and might answer several of our questions. 

Nine months later, we are back to battle-weary mode.  We are closing in on maxing out on our first epilepsy drug.  I have loved this drug.  We had about 6 months of improvements on everything.  I really have no desire to change anything, except his body either needs more, or needs a different drug soon.  We have another EEG this Friday.  And I have all the pre-procedure anxiety to prove it.  LJ does horrible with any procedure.  Blood draws are the worst, but EEGs are no walk in the park. 

I keep reminding myself the grace in this, is we have drug options.  We have treatment options, unlike when we dealt with autism and you are just guessing.  However, my son, as usual, has atypical epilepsy in every way.  Things may not be any more straight-forward than it was when we thought he had autism, and the road may be just as rocky.  (I still have a lot of questions with the autism.  I look back, and I don't know that it wasn't epilepsy the whole time.  LJ has absent seizures and his symptoms today look like his symptoms from the last 10 years.  We have no family history of seizures, and you cannot tell he has them, but it affects his executive functioning and processing significantly.  That is probably a whole other post.) 

I have spent the last month searching....searching for ways out of the isolation my child's needs create, ways to connect with other families, ways to connect with other homeschoolers, ways to create a life that is less living in need and more giving....but LJ's needs take a lot out of our family.  So I have been praying and searching and waiting....I think today, God gave me an answer.  

 

LJ's special needs are my fire.  God's refining fire, reminding me of his grace daily and sanctifying me into a better mother, wife, friend, Christ-follower.  God scatters His glory, His seed, by sending me fires.  The National Forest does controlled fires with the Giant Sequoias to help spread their seed.  I enjoyed my 9 months of rain, but it is apparently a time of fire again.  As with the Giant Sequoias, I think new growth will come of this.  I talked with a wonderful, experienced lady this morning about epilepsy and through my own need for one, realized there are no local epilepsy support groups.  God gave me this friend who also has a child with epilepsy about my son's age, and also homeschools, and is willing to do this with me.  This is where God's glory shines...new growth.

Set My Heart Free

"I have chosen the way of truth; I have set my heart on your laws. I hold fast to your statutes, O Lord; do not let me be put to shame. I run in the path of your commands, for you have set my heart free." Psalm 119:30-32

"...For you have set my heart free."  I have heard many people reject God because they "can't be good enough" or they feel there are too many rules. My own rebelliousness in contrast has been very small in my life. Some laugh at my attempts to rebel, but in my heart, it still is, even if it seems small to our culture.  And note, I say rebelliousness, not sin.  I sin all the time.  Every day. All day.  And I am thankful for God's grace that covers it, but I digress.

The secret I find many are missing, as described in this Psalm, is that God's laws set us free. They set our hearts free.  They protect us. They give us freedom.  Freedom from guilt and shame and the chains of sin.  God's laws were never meant to bind us, but to free us.

There are a lot of changing laws in our country right now. I read this Psalm, and thought, our country has lost what it means to be truly free. We have lost Christ. We are making new laws that hold us all in more chains, which is the antithesis of the Great Revolution of the United States. (They are also the antithesis of the gospel of Jesus Christ.)  We are making laws to protect everyone's rights, but as a result, by the very same rule, we are denying someone else's rights to be who they are.  More division.  More brokenness.  More pain.  Chains and more chains. 

It was a good reminder to me this morning, on the dawning of a new age, that God's laws have already set my heart free. I also read Psalm 11, which was a reminder of how big our God is. I do not have to worry about what laws do or do not get passed in this country. I am not in chains. I am free.  The only laws I have to follow for my freedom are God's laws.

"There is a strong stillness deep within me, the place where God lives. He is not pulled in ten thousand directions and in Him, neither am I," says Emily Freeman on Ann Voskamp's website "A Holy Experience." 


"In Him, neither am I."  I think that is so true.  So often, with kids with special needs, with a path chosen that is different from so many others, and the path is lonely.  I get weary and burdened and isolated based on the needs of my kids.  Yet I feel no compulsion to change our course. No drive to jump on the train everyone else is on.  It is very clear to me what path God has chosen for us.  I cannot change the needs of my children. I cannot change that homeschooling is the best fit for us right now, the right calling for us right now.  We have doctor appointments and therapy, medicines that sometimes take us half the morning to drink, body reactions that need to be monitored, fatigue and naps that need to be accommodated, allergy-free food that needs to be prepared.  I cannot change any of it.  And so, with certainty, we follow this path.  This very narrow path that is different from many others.  It is focused.  It is unknown.  It is wearisome.  It is lonely.  It is difficult.  But there is a peace that comes with acceptance of this path.  We embrace the good days.  We rejoice on the days we get to spend with friends.  We rest in thankfulness on the days where there is health and smiles and play.  Those are the moments we treasure, and they are all the more meaningful in-between the days that are hard.  But even on the difficult days, we know, this is our path, God is our comfort and Savior, and we dig deep to remember the reward of the good days.  The blessing of the good moments.

5 Special Needs Homeschooling Helps

I just finished writing an email to someone asking for advice on how to homeschool their kid who has autism.  At first, it was a lengthy rambling of history.  After the computer accidently deleted half, I got more focused, and realized I had a blog post by the end!  So here are my personal helps on homeschooling a kid with special needs.  Every kid and their struggles are different, so keep that in mind here. 

Make a list of rules.  Maybe give him a reward (a sticker, a skittle, iPad time after schoolwork is done, whatever ways of working to a reward works for him) for each day he goes by them.


Keep your goals low early on - for him & for you.  For example, we started our year with Bible, math & handwriting (Bible is just important us and his handwriting is atrocious - we had to start back at preschool in Handwriting without Tears).  Math he is great at (although it is getting difficult now), and handwriting was his weakness.  We did one of each so he would remain motivated.  That's all we did until I realized he was ready for more.  Then we added science.  Then we added history the next week.  Reading we did thru Bible, history & science, but I have recently increased it with outside literature.  For now, I'm reading to him, based on advice from other older, wiser homeschoolers who say some kids, esp boys, take longer with the reading and it clicks between ages 10-12, and that he is developmentally delayed.  We still get books from the library that he chooses that he does read on his own, but they are things like Ninjago.  :)  Not very educational, but it's something.  If he's behind on several subjects, start small.  Start with things he likes.  Build on it.  I still don't feel like I'm covering enough with my kids, but I don't know if homeschool moms ever do.  I don't do spelling or grammar, he doesn't write stories or poems yet, there are so many things we don't do yet.  And yet, I want what he does know, he knows well.  He does have memory issues and decoding issues from auditory processing disorder.  Then we'll build on that. And he can't do 7 hours a day.  He just can't.  He can barely do 2 hours in a row.  The reward, I think, if you can stick with it, is that YOU get to see them learn before your very eyes.  You get to see that what you are putting in WILL come out.  And you will be right there with them when that happens.  Learn that you set the pace, and you know the pace he can go at.  The beauty of homeschooling is there is no gage to go by.  Eventually our kids will know the same things their peers will...perhaps they will know even more.  But they will do it on a different path than their peers.  And maybe be less stressed out and enjoy it more in the long run.

Be flexible.  When we first started, I showed LJ what we had to accomplish.  I said, these are the non-negotiables about the schedule  (Bible always comes first - I am doing a theme on putting others first/humility to focus on character), but everything else you can change the order of.  We can change where you sit while you do it.  The only other thing that is non-negotiable is that you do the work I ask you to do.  And I at least communicated, we have a structure, but if it doesn't work for you, you have choices.  Of course, sometimes he tries to manipulate that, and then he starts getting fewer choices.  Or like the other day, he kept resisting me on his math worksheet, so I finally started putting one math problem on the dry erase board at a time, so he wasn't visually looking at the whole page.  After we got thru the tough stuff, he did the rest of the worksheet by himself.  For awhile we did math & handwriting on the days Mon/Wed when he had speech & I had allergy shots, then Tues/Thurs were science or history days (1 day for each so we could take time doing the activities with them) and Friday/Sat our field days or catch up days (his dad sometimes works on Sat, so sometimes I did my errand running on Friday & make up on Sat).


Take breaks (use a timer, or do before lunch, then after lunch), do sensory stuff (I keep theraputty, play-doh, mini trampoline, noise putty, etc handy) and have snacks at hand.


Get creative.  Ok, this one is a very difficult one for me.  Teaching has never been my gift.  Creativity is like my long lost relative...I'm supposed to be related, but I can't remember the last time I saw them.  But I'm slowly learning to go with my gut.  I saw these Story Cubes at Target.  They were like $7.  While Lucas is not at a point to write a story...or maybe I'm not ready to dig in to the process that would require teaching him because last year at school he writes a bullet point story that is more like a list of facts....these story cubes you toss & tell a story based on the pictures that land face up.  Someday, I may write the story as he tells it on the easel and work our way towards storytelling & writing.  But I do things SLOW.  I have 4 kids 8 & under...nothing around here gets accomplished quickly!  :)  And for now, it's a great way to break up the other school work while still counting it as school work!  One of my friends posted that she got this new game Bird Bingo.  Well, we are doing a science curriculum where we are only studying birds. I totally bought it on amazon for $7 I think, and it counted, with the math bingo game that I think my mom picked up in the Target $1 section, as school for today.  I had appointments today, and very little time to school, but I know they actually were learning something today.  This part might be the hardest part, but after you get in a routine, it will get easier to be creative.  Or start creative and fun, and work towards the routine.  Use the new creative stuff to motivate getting thru the hard stuff.  One day, we were doing ancient Egyptian history, and I looked up apps and found one on pyramids.  Downloaded it, and made it fun for them. 


I love, love, love how flexible homeschooling is.  Make it something that works for him & you.  And finding what works just takes time.  It's ok if he's "not learning" at the same rate as his peers while you find your way.  In the long run, he will probably learn things better, in that he will understand the information better and more thoroughly.  We recently just missed a month of school because of Christmas/New Year's/moving/visiting family from out of town.  I feel very behind, but have to remind myself it's a marathon, not a sprint.  They don't have to have diplomas at 17.  It can be 19.  But regardless, that sense of accomplishment will really be something, won't it??  I was thinking about it the other day, and IF he gets there (we have such a long way to go!), I will surely be an emotional mess of a mother, so proud, and so emotional of all the obstacles he will have overcome. 

2014...A Year of Change

2014 started off with a bang.  Usually the changing of the guards, the shifting of time, passes quietly for us even if the year is full of storms.  This year, the winds of change began 2 days after Christmas when we got a contract on our house and will continue throughout this year.  Our move is just one of several big things God brought into our life in 2014. 


There are a few things the last few (dizzying) weeks have brought me. 


God's timing is perfect.  5 days after we sold our house, we found out some difficult news about someone dear to us. 


Waiting on God leads to His perfect timing.  The timing of our transition enables us to be there for them in a way staying in our old routine did not.  We could not have done this had we not sold our house, nor if we had sold it too soon.


God prepares us even while we are unaware.  Our recent months of studying eucharisteo, thanksgiving and giving to others has prepared us for ministry to others.  Our own family's change of moving has become insignificant in light of the burdens of others.  We have several people in our lives who are suffering.  My prayer is that our family may be used in their lives to encourage, lift up, and serve.