Tuesday, January 31, 2017

Needs of a Special Need Parent

How can you help that special need parent you know?  That mom who is struggling with her own emotional baggage?  That dad who is stressed to the max?
Maybe you are friends with parents of a special need kid.  Maybe they're your neighbor.  Maybe even your own relative is raising a child with some type of special need, be it physical or "invisible" (is any special need truly invisible? I think that description is such a stretch!).  Whatever your relationship is to a parent who is raising an exceptional child, you landed here because you are wondering how you can help.  So, here are some very really & very helpful ways to help ease the stress of parenting a differently-abled kid.  Pick your favorite, or rotate through them all, just let that parent know YOU SEE THEM, and they matter.

Respite - seems the most obvious of needs, right?  Yet it's usually the least offered. Or, shall I say it's offered, but with very little follow-through.  How wonderful it would be if more people would recognize this very real need & follow through on their offer to help.  
  • Pick the kid(s) up for a quick trip to the neighborhood park while mom and/or dad rests/reads/cleans/showers/drinks actual HOT coffee.
  • Come over & entertain the kid(s) -even for just 30 minutes!- while mom sneaks away for a peaceful walk or runs over to nearby coffee shop for a moment of normalcy.
  • Invite the kid(s) to your house to play with your kid(s) (or yourself) for a few hours so dad can clean the garage, so mom can go grocery shopping, so mom & dad can nap.
  • Offer babysitting any night of the week (or even during the day on weekends if witching hours scare you, or the kid(s) are more difficult at night).  Send mom & dad off to enjoy each other's company uninterrupted.  (Have you seen the divorce statistics for parents of special needs kids? Crazy high. Why? Not only is there constant stress in the house, but also, there is rarely time to devote to the marital relationship!)
  • Tell mom to schedule that doctor/dentist/hair/nail/etc appointment & you'll be there to watch the kids. Don't ask, TELL.  We don't make self care a priority.  Personally, I cancelled my last dentist appointment because my child didn't sleep the night before & refused to go to a friend's house while I had my teeth cleaned.  I haven't had a well woman exam in, oh... 5+ years! We do not put ourselves first, we need someone to MAKE us do that.
Acknowledgment - we need to know someone sees us.  What we are doing is even more thankless than moms of neurotypical children.  We take constant abuse (some verbal, some physical, some both!), we spend every ounce of our energy being sure other's needs are met.  We try to use our learned lessons to help others.  and yet, we fell invisible & left out.
  • A card in the mail with a silly joke to make us smile.
  • A handwritten letter, that spells out ways we matter to you & others.
  • An email or text just to say you're thinking about us.
  • A phone call, though we'll likely not answer... so a voicemail, just saying hi.
Gifts - gifts don't have to be extravagant or overthought (though those are also welcomed), just something that shows us you see us & that we are valued.
  • A special treat - coffee, soda, tea (caffeine is almost always a welcomed gift!), chocolate, our favorite junk food, an extra cupcake you have... whatever might bring a smile without costing you mush money or effort, left on our doorstep to surprise us.  (Might want to text if that door doesn't get used much, ha!)
  • That special little something you saw that made you think of us.
  • Flowers/plants, because even if we aren't big into those things, the life they bring with them sometimes is just the right pick-me-up.
  • A book - be it a trashy magazine, a best seller, a self help book (be sure you know we want it or you can create a whole new problem!), a coloring book... anything we can attempt to escape with while we sit by our UNsleeping child in the wee hours.
  • Bubble bath/soap/lotion - something to encourage us to slow down & care for ourselves a bit.
Help - we need more help than we will ever admit to you.  Even if you are our very best friend.
  • Come over & do the dishes while we chat. We'll tell you not to, but really, we're not going to stop you if you insist.
  • Drive all of us to the park & help wrangle the kids.
  • Advice, a new perspective, or support in whatever latest & greatest effort we're attempting to use to improve our child(ren)'s situation.
Friendship - it's so easy to lose friends when you're a special needs parent.  We don't always have enough time to devote to friendship, we bring a lot of baggage, we have horrible memories because our brains are full of information for our kid(s)...  We really need loyal friends though!
  • Talk to us - tell us your problems! Don't think we don't care or that your problems aren't as bad as ours, so they aren't important.  Tell us about silly things going on in your life.  Talk to us about real life.
  • Listen to us - sometimes we don't need a fix, we just need an ear. But you've got to really hear us. Our spouses can be so overwhelmed that we don't want to burden them with some details, or they are so tired they don't hear things we share. We need to share.
  • Laugh with us - our lives are difficult, but they are also fun filled! Our children are our lives, but they aren't all that we have going on!
  • Get us out of the house - or sit with us in the house.  Just encourage us to have a few hours of ME time, to be selfish & enjoy the company of other adults.
  • Understand us & be patient with us - we often forget to return calls or texts, so call or text again (and don't take it personally).  We say things we don't mean at times because we're just so overwhelmed - don't take it to heart, but tell us if we hurt you so we can fix it. 
  • Accept & love us - if our lives are too much for you, don't waste our time (we make great acquaintances, way less drama with that sort of relationship). If you're willing to take on our friendship, accept that it might not be the easiest, but it will be worthwhile.
  • LOVE OUR KIDS - if you can't accept our kids AS THEY ARE, and love them AS THEY ARE, let's not be friends.  Our kids come first & we just can't be friends if you can't deal with the fact that our children are a bit different.
The biggest thing we need is people who care.  We have this crazy ability to weed out gawkers & drama-seekers pretty quickly.  We don't have time for that stuff.  We need love & acceptance, just like you - just probably on a bigger scale than you.  We are human, and we have good & bad days, just like you - just probably on a bigger scale than you.  
We were thrown into this crazy life, we didn't chose it anymore than you chose anything that's been thrust into your life, and we sure didn't have time to read any how-to books to prepare for this!  We are tired, stressed, scatterbrained, & a bit crazy, but we are also amazing people who led totally different lives before becoming parents to special needs kids.  
None of our kids are alike, even if they have the same diagnosis: most of us have kids with sleep issues, kids who don't "behave normally" in public settings, and kids who challenge us every. single. day.  Some of us have to wrangle our children's physical needs, some of us have to wrangle our children's neurological needs, and all of us have to wrangle our own emotional needs because of our parenting status.  If you'll take the time to get to know us - and our kids - much better, you'll be blessed by the amazing things you discover.  
Our kids are people first.  Our kids are KIDS first. The fact that you're reading all this proves that you already know this & that you probably already love us.  You may also already know we - the parents (especially moms!) - are pretty slow to admit when we need help.  But need it we do!  So, maybe don't ASK how/when/where you can help, just show up and do it. Don't take no for an answer.  It's really hard to allow others to step in & help, REALLY hard, but if you love us, please do it.

Sunday, March 13, 2016

I'm ready to go home!

We've lived in this new city for almost 4 years now.  We've met incredible people, made wonderful friends, seen new things, experienced life in an even bigger city than the big city we grew up in...  But.  /sigh/  But.
I'm not sure that many, if any, days have gone by that I didn't long for being back where I "belong".  It's not that I've been made to feel I don't belong here, and it's not that we haven't made a wonderful life for ourselves here, but if I am being totally, completely, utterly honest - this is not where my heart lives.  My heart is with my family, and with my friends that are like family, and with the city I knew & loved for 32 years. I am done.  I want to go home.
I miss having dates with my husband (because, let's be honest, after paying a sitter, who actually has money for a date?!), I miss the comfort of visiting family whenever the mood stuck (or someone had a birthday, or an anniversary, or a bad day, or even because my dad flipped another car (yeah, that's right! love you daddy)).  I miss knowing the way to get everywhere (even the secret backroads) without using a GPS.  I miss sitting on my best friend's couch and doing nothing - because there was no lingering feeling of having missed so many events, or of the upcoming separation when I went home.
Family is so different when you're not close by.  Yes, we visit them & they visit us, but it's such a different feeling.  The relationships have changed, the dynamics are skewed.  Again, there's a lingering feeling of what we've missed & the fact that the visit will come to an end & then there may be months between our visits.  I feel badly asking the kids' grandparents to watch my kids so I can catch up with friends because then I'm not spending time catching up with my parents (or my in laws). Even the longest visit has time constraints & logistical difficulties.  Extended family members and friends who aren't the super-closest of close get left out of so many visits.
Really, what I'm saying here is that IT SUCKS.
I want my kids to know their extended family better.  *I* want to know my extended family better - short visits a few times a year don't leave much time for deep conversations, it's all so superficial! I want my kids to grow up with the kids of my lifelong friends.  I want to see my lifelong friends' kids grow up (and not on Facebook or Instagram).  I want to make sure my kids see how very important family relationships are - so they don't move super far away with my future grandchildren!  (haha)
If it were as easy as packing our things up & crossing our fingers, I think I'd beg & plead until I convinced the hubby that moving back home is the best thing for us.  But it's not that easy.  (Especially in this economy.) Don't get me wrong, IF (I feel like that's probably a pretty big IF!) we ever move back I will miss the friendships we have formed here. I'll miss so very many things about the life we've created here (and, hello, we live in THE BEST neighborhood ever. For real.), but I'll have my mommy.  And my mommy-in-law (who really is great, I don't believe all that evil mother in law stuff!). Anyone who has a half-way decent mom has to know that having your mommy close by kinda trumps all other things.  Am I right??
Why am I pouring all this out now?  I have no idea.  Just felt the need to be totally honest.  (Plus, maybe if I'm lucky someone will read this & offer the hubby (or myself) some amazing job opportunity to take us back...) Maybe I'm having an especially homesick moment right now.  Maybe I'm completely overwhelmed with my life & wish my village-that-was-a-village-before-I-knew-I-needed-a-village was closer to ease some of the burden.  Maybe I just realize life is really short & I'm missing a lot of the days of the lives of the people that matter most to me.  Or, you know, sometimes I just like to overshare. I have a sneaky suspicion I'm not alone in the feelings I have though.  Not sure that knowing other people feel the same really helps in any way, but it does at least remind you others suffer too.  hahaha.
So, in summary.

Tuesday, December 29, 2015

Our First Homeschool-iversary.

It has almost been a full year since we started this journey.  This year went insanely fast... while also crazy slow.  How do I feel about homeschool as we enter year two?  Well, basically they same as I did when we entered year one.  Excitement, apprehension, joy, fear, less stressed, more stressed, but I will add a new one this year - EXHAUSTED.  This 24/7/365 parenting/teaching/chauffeuring/guiding/disciplining/cleaning-up-after thing is really hard! I mean, with a 3 year old in the house I suppose I'd be doing all that 24/7 anyway, but with an 8 year old around too, yikes.
Some days I think I should've just kept on fighting the school.  Maybe it would've been less exhausting. Perhaps I'd be slightly less stressed.  Possibly I'd even have a bit more peace & quiet in my house on the daily.  Except... no I wouldn't.  I'd be exhausted from fighting administration & teachers who didn't really want to "deal with" my child.  I'd be more stressed knowing my child would be walking into an environment that wouldn't alter things to reach him where he needed to be reached.  I'd have more peace & quiet for several hours a day - but that after school kid that I got every day was SO. MUCH. MORE. than the kid I get all day every day.  (Parents with kids in school, I think you understand that! These poor kids save all that energy & angst up all day & let it out on you the second they get home - am I right?) I guess what I'm saying is, that when I sit here some days, having a pity party for how difficult I've made things for myself, I need to remember how wonderful I've made them for my child, and ultimately our family.
We still follow more of an unschooling theory.  We do some math (Life of Fred is awesome!!), and we've been working on grammar (First Language Lessons, while a bit boring, are fairly easy & seem to sink in well. I do suppose "forcing" this subject is against unschooling principles, but I want KMan to sound as intelligent as he truly is.), with lots of reading & the occasional other misc "work" (Mad Libs are KMan's personal favorite).  We did a session of GameEd Minecraft School (he chose a science class), but KMan didn't get into it quite as much as I thought he would. I'm thinking of adding some art over the next few months because both boys enjoy it so.  Other than those things (which take up about 45 min of a day). We go to Bible study weekly, MOPs every other week (both of those have a class for homeschoolers!!), we do recess almost every day (this is FANTASTIC for the kiddos!), and a weekly American Ninja Warrior class.  The rest of our time we spend discovering outside, building Legos, playing board games, and fighting learning how to work out differences. We also do chores, which is of course the kiddo's favorite thing.  ha.
The days, they slip by so quickly! On the harder days, I try to remember how fast this journey has already gone & that it's not that long until my children will live in their own houses & do their own things.  I will long for these days again, because I feel quite certain that the hardest moments will be erased from my memory over time.  I will most certainly cherish the fact that I was able to spend every. single. day with my children & know them on a deeper level than most parents get the chance to do.  --That doesn't mean that some days [right now] I wish I didn't know them quite so well...
We are not promised tomorrow, so I do try not to stress over how things will go next year or the year after. Being a planner though, I do wonder what our life will look like as the years go by & if there will come a day that KMan wants to try public school again (though doubtful) and how I will feel about that idea.  The kid is just so very smart (I don't mean that as a mom brag, just a fact), and has so much potential for the future...  I do hope that I am doing right by him & that I am nurturing his intelligence in an appropriate way, not dwindling it by leaving it up to him to choose his studies.  I think all parents - working/stay at home, homeschool/private school/public school, single/married, old/young, etc, etc wonder if we are doing best by our kids.  I think we all also believe we "could never" do something another parent is doing.  I once said I "could never" homeschool my kids.  Well, here we are.  I think I'm doing an okay job most days.  I still have plenty of hair left to pull out, the kids are still alive, and the hubby hasn't run away.  I wish I could find a way to feel more joy in the ups & downs of the day, but I am working on that. Meanwhile, we're going to venture on to HOMESCHOOL YEAR 2 - grade 3. (That's right, just 9 more years to go... with the oldest anyway.)