God Never Promised Easy ...

I'm saying' it.  Special needs isn't easy.  In fact, it's pretty hard all most all of the time.  There are things that become a new normal or fairly routine, but it's still not easy breezy.  But we all know that God never promised any of us an easy road.  In fact, I'm pretty sure he said his way would be a little more difficult. (John 16:33)

This week has been another particularly difficult week.  More difficult than the normal difficult anyway.  It's been the kind of week that has laid my struggles out on Main Street, U.S.A. for all to see (literally).  My son with special needs is still in a stage of life that has behaviors that aren't explainable in his body of a young man.  This is dangerous for him and anyone around him.  This keeps me awake at night writing blogs in my head and praying prayers of desperation.  

A couple of things I've been reading reminded me that maybe God is using my boy and actually drawing attention to him for a greater purpose.  I've said before I really respect a writer, Greg Lucas, for the things he writes about his son's disabilities.  He has a way of pointing me towards Christ every time.  Another recent article written by Sheri Dacon mentioned special needs is kind of like being naked in public.  She says everyone notices in one way or another: some people are mortified by the nudity (special needs) and run away, some pretend not to notice but actually peek from around the corner,  (This would be the acquaintance that walked by, then got in her car two cars down and continued to watch our SUV rockin' peep show - MmHmm, I saw you.  Next time offer help or move on.)  some people will just out right stare at the nudity without apology.  A friend once said being a pastor's family is similar too.  She said it's like living in a fish bowl where everyone can watch your life on display.  But dang, it gets tiring.  I just want to crawl under a rock and never come out.  But how is that glorifying God?  He's drawing attention to our weaknesses for a reason.  I'm guessing it's for His glory, not for my harm. (Jeremiah 29:11)

So in between blog writing in my head in the middle of the night I am praying those prayers of desperation.  I have been thinking about Christ praying desperately.  Luke 22:44 says he prayed so hard his sweat was like blood.  Now I've prayed so hard I've cried. I've cried ugly, heaving, snot, prayed.  I've prayed so hard all I could say was, "Jesus".  I've prayed so hard I didn't even know what to say but hoped the Holy Spirit was speaking the words for me.  But I know I have never prayed so hard that my sweat was like blood.  

So while I wait on God's plan to unfold for my son's and my family's life, I will continue to pray through our difficult days. 

Bible verse I'm loving today:
Luke 22:43 "An angel from Heaven appeared to him and strengthened him."

Tips for Questioning the Special Needs Parent ...

I was recently asked by someone if she could ask some questions about my son that has special needs.  The person who asked had every right to ask questions.  Why?  Because she is truly invested in our family and in my son.  

But this led to us talking about who does and doesn't have the right to ask personal questions about kids with special needs.  Some people think they have the right to ask such personal questions that it sends me over the edge at times.  I have stopped going to parties of even close friends because there will be people there that think because we are a friend of a friend that gives them the A-Okay to ask invasive questions.  Think again, people!

Here are a few tips to know if you should or shouldn't ask questions.  

Are you a close family member?  And by close I don't just mean related.  Do you see each other, interact, hang out often?  Then you have probably earned the right to ask questions.  You probably already know the detailed stuff.  Do you see each other only on holidays?  With so many forms of technology to connect you may be close and only actually see each other at family gatherings.  But if you only speak at the potlucks then maybe ease into some general questions first and see where it leads.  Take your que from the parents.  If they seem open to more questions then by all means keep the dialog open.  If your questions get answered with short yes or no's.  It might be best to end the interrogation before you get punched and one of those fabulous family fights breaks out.

Are you a close friend?  And by close I mean would she answer your text in the middle of the night?  For me, other than the aforementioned close family, this is a pretty short list of about two people.  I could maybe stretch it to three for an emergency.  But I NEEEED my sleep so that text better be important.  And those two people know that.  They also know at what time I will no longer be answering texts.  Sure, you can send as many as you want.  But these two people are the only two people that will get an answer from me after that time and they know this.  So go ahead and test this theory if you think you need to, but my advice is to think it through first.  (I get kind of cranky after a certain time.  My family calls it the vampire coming out if that gives you any warning, hehe.)  If you don't think the special needs parent would answer your text in the middle of the night, then don't ask her personal questions about her child.  If she leads the conversation to these subjects, then she has given you an open door to ask some questions.  But be gentle.

This leads me to one more thing.  Privacy.  If you are privy to this child's private details, please, PLEASE!!!!, do not share this with other people.  (Remember, I asked nicely and said please.  I know if I find my child's private details have been shared without permission I can get a wee bit nasty.  And FYI, so ends the open door policy to the private info.)  You have been invited into someones personal and sensitive information.  No one wants to hear that friends of friends are "praying for you" or whatever on Facebook.  Your close family and friends are not necessarily their close family and friends.  Err on the side of discretion.

So ends today's tips on questioning the special needs family ...

Bible verse I'm loving today:
Proverbs 17:17

Learning About Vacations From My Special Needs Son...

Believe it or not, my son that has special needs is the one teaching me.  I think we all have something to learn from kids.  This shouldn't surprise me.  Jesus tells us to look to the children if we want to know how to receive the Kingdom of God (Luke 18:16-17).  But I never expected to learn something about vacations from my son.

Recently my sister visited England.  My dad and brother biked across the state.  My brother is traveling through the United States and Europe during his pastoral sabbatical.  My step-mom just returned from a mission trip in Mexico.  My friends are taking trips this summer that include the Black Hills and other places.  Everyone is going somewhere.

Later today I might go to ... Wal-Mart.

Being the mom of a special needs son means we don't vary our routine by much.  All children need a routine (and some of us adults benefit from one too).  But we depend on routine.  We may decide to go to Target instead of Wal-Mart or the playground by the lake instead of the one by the city pool.  But our routine is basically the same everyday.  Some special needs kids crave the expected.  When that changes, the unexpected, the unknown, it messes with their equilibrium.  And when you mess with this world, you can create turbulance worthy of seeking the nearest storm shelter.  

So, needless to say, we don't vacation much.  Routine is just one reason we stick close to home.  We've learned the hard way "There's No Place Like Home".  But every spring I get asked, "What vacation plans does your family have this summer?"  I thinks it's harder for the person asking the question to hear my real answer, so I usually hem & haw around trying to find the right words without putting a damper on their own vacation excitement. 

So here is where I get to what my boy is teaching me.  My reasons for wanting vacations has always been all about ME.  They are all about why I need a vacation, where I want to go, what I want to do or not do ... you get the point.  All about me.  But if my son was more able to plan his vacations, I am absolutely sure his trips would be all about everyone else.  He is a people person.  If my mom were alive today she would call him a 'social butterfly'.  He LOOOOVES to be with people, talk to people, see people all day long.  He would spend vacations hugging, invading personal space, asking very personal questions. (For instance, "What's the name of your underwear?"  Yep, you heard me.  Make your answer creative.  We don't want to hear any boring Hanes or Jockey answers.)  But mostly ... loving people unconditionally.

What I am learning about vacations is what my son already knows about life.  It's not about me.  It's taken me all these years to figure something out that he lives day in/day out:  Love your neighbor as yourself.  My son with special needs is brilliant.

Bible verse I'm loving today:
Mark 12:30-31

The Isolation of Special Needs ...

I am an introvert.  I enjoy solitude.  But solitude is very different from isolation.  Solitude is a choice.  Isolation is the consequence of a situation.  One of the most difficult things I am experiencing lately is the isolation that special needs can create.  Special needs can be isolating to the child with the needs and for the family members.  Support in itself is easy to find.  We've had that from the beginning.  Support is in place from the time you leave the hospital almost.  Besides the umpteen doctors, there are therapists; physical, occupational, speech, recreational, cognitive, you name it and we've had it.  We still have a variety of doctors, therapists and educators.  They are all needed and so valuable.  I couldn't get by without them.  But I've hit a point where I miss doing real life things.  

My husband and I have gotten used to doing things separately.  One of us is always with our son while the other recharges.  A couple times a year we get to go out together and we realize how much we miss being alone together.  We experience the same isolation from friends and church groups.  And we miss them.

In the beginning when my son was young we had friends that were also having babies.  Like most young couples we would get together and let our kids play.  But as our children grew in size, my boy remained mentally at a young age.  This can be a strain on even the best of friendships.  It's not that we didn't try to remain close.  But the differences between our children became more obvious and harder for each of us to address.  Before you know it years have passed and there aren't many people left that surround the special needs families.

The same applies at a young age for church life.  It's easy in the beginning to plug into a class.  Everyone is willing to hold and teach the cute, special needs infant and toddler.  But as the years progress, the challenges also progress.  Most of our churches aren't equipped to care for a child with intellectual disabilities, let alone teach them. So our churches go much like the rest of the world.  If we say hello in the hallway then we haven't neglected the least of these, right?  Meanwhile, not only is the now teenager not being ministered to in our churches, but the parents aren't ministered to either. They are unable to attend any classes.  And if lucky enough to attend a church service, actually paying attention to the content is rare.  Step by step we are removed from the one place we have hoped to remain connected no matter what the situation.  There are a handful of large churches in the United States that have special needs ministries.  But honestly, we spend our lives isolated from others.  We want to be included with everyone in church, not segregated yet again.

As special needs parents we come to terms with losing our connections to friends and church.  But what's really difficult to see happen is how isolating disabilities can be for our child.  For whatever the reason, the world finds it difficult to be close to those with most any type of disability.  We have been fortunate to have an older son with the discernment to choose great friends that try to include our special needs son.  They are awesome guys that do their best.  But they are my older son's friends.  A close friend for the special needs person is hard to find.  No one calls up the special need kids to go out and play or go to a movie or go out to eat.  Who can blame them? Not many other teenagers want to go to the park to swing.  In fact, the only teenagers I see at the park are usually up to some kind of trouble.  If we go to a movie we run the risk of it being overstimulating and causing a severe meltdown.  And going out to eat, well there are medical issues to deal with, and I don't know a single teen that could handle these.  Quite honestly, going out without a parent is almost impossible.  

What's my answer, you ask?  I don't know yet.  I'm still working on it.  Or maybe I should say, God is still working on it.  I've learned over the years there are a lot more unanswered questions in special needs than definitive answers.  Until God helps me see just how we involve our family more in our community let's go with this ... 

• An awesome young man at my son's school asked my son to eat at his table during school lunch ... Please keep asking.  Someday it's gonna work out.  
• At church maybe you sit in the last pews by the door just because you like it there.  Perhaps a special needs family could really use those last seats just in case a meltdown occurs ... Risk changing where you sit, let them have those seats and scoot up a few rows.  Or better yet, be brave and ask them to sit there with you.
• Do you have a once but no longer close friend that has a special needs child?...  Call, text, email.  It's awkward.  Neither may know what to say.  But if you've been close she will want to know about your job, your kids, your life just as much as you want to know about her life, struggles and all.  

I don't think God ever intended for us to be isolated.  We were created to work in a community of Christ (1 Corinthians 12:1-11).  But I can't help but wonder what the church is missing when those with special needs find it difficult to participate.

Bible verse I'm loving today:
1 Corinthians 12:25-26

Let it go ...

Let it go.  That's the new phrase in our house.  It started with the song from the movie Frozen.  We just couldn't get that song out of our head.  Then it became a theme song I would sing every time the boys would start arguing about something ridiculous.  It stops the arguing as they just stare at me in wonder ... wondering if I'm off my rocker.  (If you would like to get this song stuck in your head ... here it is.  But don't say I didn't warn you.)

But the truth is I am the one that really has trouble with letting it go.  I tend to hang on to things.  Not things as in possessions, but things as in what has been said, done or could have the teensiest, slightest chance of happening.  For instance, when people say - "I don't care if my baby is a boy or a girl.  I just want a healthy baby."  Drives me crazy!  I want to say 'what if baby isn't healthy?!  Then what?  You don't want it anymore?'  I know, I am way overreacting.  People don't mean it that way.  Still, I can't let it go ... Some years ago I was told by someone who is a leader in education that my special needs son should just take two music classes instead of making appropriate modifications in a different class.  Would this have been said if a child in gifted classes had run out of options?! I know this person was just misinformed.  But still, I can't let it go ... Waaay back in high school I made fun of some people that I didn't know were the parents of a girl that was nearby.  I felt terrible.  20plus years later I still feel terrible.  And still can't let it go.  These are just a few examples. I have many more like them constantly bouncing around in my head.  Along with that I have worries of things that haven't even happened yet.  CAN'T.  LET.  IT.  GO.

My son with special needs tends to be obsessive about things.  One of the things he is obsessed with now is reusable grocery bags.  He loves them all, any bag really.  All shapes, sizes and colors.  He can spot them from 100 feet away.  He must have it!  He probably has 50+ bags.  But every couple of days a different bag becomes his favorite bag.  We never know which one will be the day's favorite bag.  But if we cannot find that bag, look out.  We must find that bag as he says, "right now".  He will not leave us alone.  And since he carries these bags everywhere, it may not be where we think it is.  Doesn't matter.  Find the bag.  RIGHT NOW! 

Lately I've been wondering how God feels when I can't let something go.  I obsess.  It's all I can think about.  It's all I can talk to Him about.  I need an answer 'right now'.  Does God go crazy with my requests, yelling, "Stephanie!!" to get my attention?  How does he try to get my attention?  How does he try to redirect me?  Does he ignore my constant begging for a solution 'right now'?  Is He thinking, "For the 47th time, Stephanie, I don't know!"  Obviously, I don't really know what God is thinking or doing during my temper fits.  But I'm pretty sure he handles it much better than I handle my son's OCD.  I was going to insert a Bible verse here about God being compassionate and slow to anger.  But do you know how many I found?!  Nine!!  I think God's point is He is compassionate, slow to anger and abounding in love.  

A loved pastor and friend gave a sermon about giving our concerns and worries to God.  He knew some of us (ME!) are visual learners.  We need to see the concept in action, not just hear it, for it to become real, memorable, useful... (Remind me to tell you about the visual sermon he gave on Christ's beating before he was hung on the cross.  Holy smokes, that one stayed with me.) ... But back to letting go --- He had us write our concern on paper.  Wrap it up/fold it, and actually give it to God.  We got up out of our seats and gave it away.  His point was in giving it away we weren't to take it back.  It's God's now.  It was out of our hands, therefore out of our minds.  Give it to God.  How many times do I continue to take it back from God.  Back and forth.  It's not really trusting that God will handle it for me, is it?  It's saying that I can handle it better.  But not letting go isn't working so well for me.

Just like I want my son to continue to come to me, I know God wants me to come to him for help.  I know He is the one who can help me stop the obsessing and worrying (Phillipians 4:6-7).  I know the closer I am to Him the closer I am to letting go and getting the help I need (Psalm 46:1).

Bible verse I'm loving today: Matthew 6:31-34

I know what he can't do!

This is going to be a bit of a rant.  By now you know that I have a son with special needs, both physical and intellectual.  And believe it or not... I know what he can't do!

My son is in high school now.  But since he started kindergarten, everyday I have been met at the day's end with a list of what he hasn't been able to do that particular day.  This isn't a reflection on the educators.  They are extremely caring people that I know want only the best for my boy.  They have expectations from parents, school districts and state law that can be mind boggling.  I trust them with his life.  I am thankful for their dedication to my son & a difficult field in which to teach.  It's a reflection on the education system as a whole of our children with special needs.  

Children with special needs are constantly trying to measure up to a standard that has been set, usually it seems just out of reach.  There is data upon data that must be kept of what they haven't achieved.  And if by chance they do achieve one of the IEP outlined goals, another distant goal is quickly put in place.  

Our typically developing children are praised with every step.  We give them awards throughout their schooling - Best Athlete, Best Actor, Best Singer, Best Instrumentalist, Best Scholar, Best Scholar Athlete, Best: Insert the organization here.  We tell them to showcase their positive attributes on applications for college.  We praise them with not only awards but award banquets to present these numerous awards.

We praise them with McDonald's hamburgers for A's on their report card.  Only one principal we have had has seen the value in this & unexpectedly put my son on the A Honor role.  He knew the value in praising our children for the effort they put into their education.  Not all children will receive A's, but they may have given it their all just to get that C.  This principal also knew the kids in the "Transition Room" weren't graded on an A-F scale.  They were never given the opportunity to even aim for an A on that report card.  That little bit of recognition for my son was such a boost to my and my son's mood.  I remember how exciting it was to do the simple act of going into McDonald's, letting my son show his report card with an A, then be handed a free hamburger.  (Just how gross McDonald's hamburgers really are may appear in a future blog rant).

Don't get me wrong - I am all for praising & awarding our typical children.  I have those kids too.  It is beyond fulfilling to have your child walk up on a stage to receive an award for the hard earned accomplishment.  All while video recording & posting on social media, of course.  I've done it.  I've done it with pride.  And I loved every minute of it!

My rant is this - Why aren't our kids with special needs awarded for the same achievements?  Once our school nurse nominated my son for a school wide year-end achievement.  How cool is that?!  She recognized his daily determination to get life done.  I loved it!  But did you read what I wrote?  Once.  Now I'm not asking for an award every time my kid walks down the hall.  But why the daily listing of what he isn't doing?  Let's just assume I know what he hasn't done from here on out.

But here is a list of what my son CAN do:

- Every night he prays to our God in Heaven about what has gone on that day.  Which usually includes his classmates.

- Every day he reminds me to put on his knee brace.  Because I am the one that forgets it.

- Every day he reminds me to give him his medicine.  Because I am the one that forgets it.

- Every day he wants to call a friend or family on FaceTime.  Because he LOVES them and wants to see them, talk to them, have fun with them.

- Every day he wants to thank someone for a long past gift he received from them.

- Everyday (If I let him) he would swing in the park, just for the joy of being free.

- Everyday (If I let him) he would visit people just to talk, laugh & be with them.

- Every day he wants to eat in all three school lunch periods so he can see his typically developing friends.  Those same kids that he is kept away from all day long.  He just wants to be a part of their normal lives. 

You may have guessed, the last one is something for which he is reprimanded.  But he just wants to be with those typical kids and experience a high five, a "Hey, Bud!", to be a part of the excitement that occurs in school lunchrooms.  For just three lunch periods to escape the 'data', the 'nose-to-the-grindstone' that happens outside of lunch.

My son was made with the purpose of bringing glory to the God who made him.  He does that everyday in my house.  EVERY DAY I am reminded of what he CAN do in Christ Jesus. Normally I would post a link to a bible verse.  Today I'm writing it out as a reminder to me & anyone who happens upon my rant that my boy was made with a purpose.  A purpose that he is constantly fulfilling.  Whether or not the classroom data supports it ... I know what he can do.

Bible verse I'm loving today:

Psalm 139:13

13For you created my inmost being;

you knit me together in my mother’s womb.

14I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

Lipstick Review #2 ...

I have once again had many requests for a Lipstick Review.  Okay, again, it was just one request.  But I feel like many wanted to request it but couldn't find the words.  So here it is for all of those unheard voices...

Revlon Just Bitten Lipstain & Balm in Instinct

This is my Go-To base lip stuff.  It's in my favorite form, the stain.  I like a stain because I hate sticky, gloppy goo on my lips.  I don't want to be the mom that leaves her lip mark on the kids after kissing them on the forehead.  Also, I just hate how sticky lips feel.  As much as I love make-up, I don't want to feel it or taste it.  And I am the kind of person that will unknowingly have it on my teeth or the front of my shirt.

The Instinct color is almost the exact color of my lips, only better.  It's a less pale version of my own lips.  So it seems to enhance the color God gave me, not cover it up.  There are probably ten or so other colors.  I have tried a couple and only one other worked on my skin tone.  It was a deeper mauve and I think it was called Mystique.  I seldom use it just because I struggle with colors that stray from my actual lip color.

The down side to almost any stain is it's drying effects.  Yes, this comes with a balm on the other end.  Throw that piece of candle wax that calls itself balm in the trash.  Yuck!  Use another balm.  Preferably something without all of the gross additives (petroleum byproducts) in many of today's lipsticks & chapsticks.  They (you know, "THEY") say that we ladies end up eating most of what we put on our lips.  So I try to keep a lot of my makeup and lipsticks free of that stuff.  This stain doesn't claim to not have those things.  So I try to keep what's on top of it more naturally derived.  And I see better results on my finicky skin.

Another thing I'm not crazy about is how long it lasts, or doesn't last.  It does need to be reapplied periodically throughout the day.  Like I said, I love make-up.  But I only want to apply it once.  I'm not one of those girls driving down the highway, with all the mirrors pointing at me, fixing my face.  (They drive me nuts, by the way).

I have found this lip stain in many local stores like Walgreen's, Wal-Mart and Ulta.  Unfortunately, the place I am always at, Target, has currently discontinued the line.  I do like Ulta because they usually have coupons in our local newspaper and testers to check the color before you buy.

So here's the recap of the Revlon Just Bitten Lipstain in Instinct:

Pros:  

It's not sticky, I love the color, it lasts longer than most lipsticks, and it seems to enhance anything I put on top of it

Cons:  

It's drying, it isn't naturally derived, the balm is yucky, it doesn't last as long as I would like (meaning all day), and it seems to run out or dry out quickly (I go through a tube quicker than most)

Overall, I really like this lip stain.  At least until I find something better...

Bible verse I'm loving today:  Proverbs 12:19