How Did You Get Out Of the House Looking Like That?

Yesterday, at 2:58 pm, Ryan and I left the apartment for therapy, which (presumably, but more on that later) started at 3:00.  We were going to be late.  We were going to be late because Ryan had gotten himself ready to go, and he was wearing a blue tank top, black shorts (as opposed to the blue ones which nicely matched the tank), inside out with both pockets blowing in the breeze, his sandals on the wrong (filthy) feet.  We were going to be late because “YOU CAN’T GO OUT LOOKING LIKE THAT, RYAN!!!   FIX YOUR SHORTS AND PUT YOUR SHOES ON THE RIGHT FEET!”  (He knows which way they go.  You can’t not know and choose wrong 100% of the time.  He wears the damn shoes how they feel “right” to him…his feet, and I legitimately don’t know how HIS feet feel in shoes.)

Ryan said no.  He didn’t WANT to go to therapy at all, but he had gotten himself ready anyway.  I had a choice to make.  Were we going to therapy, or were we going to stand in the living room and argue about clothes?  Well, let me tell you, after arguing a bit, I gave up and we went to therapy.  We went with his pockets inside out looking like handlebars on his butt.  We went with shoes on the wrong feet.  We went wearing clothes that didn’t match.

This morning on Facebook, I saw and shared a post about this exact subject.  It inspired me to write this one.  You see, as children grow, we want them to be independent.  We want them to begin to make choices.  To be able to express themselves.  Shawn is 18.  His choices are things like college choices, drugs and alcohol, safe sex.  Big decisions facing that kid.  Ryan, on the other hand, Down Syndrome, Two time Leukemia Survivor, complex medical needs and a developmental disability, he doesn’t get many choices.  He HAS to go to doctor appointments.  He HAS to take his meds, get the shots, have the procedures.  Worse than that, he has to do it when I say.  With Shawn, I can ask him if this or that day for this or that works for him.  He gets to say yes or no.  He gets to refuse to go at all.  If Shawn is hungry or thirsty, he can (not that he does, but he COULD) get his own snack or drink.  Ryan can’t do that.  Can’t, and is also not allowed.  But guess what?  Children who have no control over their lives ACT OUT, and they find ways to take control.  Let me tell you about yesterday.

Ryan had an allergy skin test scheduled for 9:30 yesterday morning, which meant that his antihistamines have been held for a few days, some of his other meds had been rearranged to compensate, and a steroid burst had been added.  But our day had started earlier than that.  Around 5, Ryan woke up and couldn’t find Snakie.  I refused to get up and help look, because  “I TOLD YOU LAST NIGHT THAT IF YOU TOOK THAT SNAKE TO BED WITH YOU AND HE GOT LOST IN THE NIGHT I WAS NOT GETTING UP AT DARK O’CLOCK TO LOOK FOR HIM!”   So then Ryan tried to get in bed with me to snuggle.  But it’s HOT, y’all, and I’m menopausal, so I hollered at him to get back in his own bed.  Around 8, when I woke up, he was sound asleep in his own bed, wrapped in a sheet.  Guess what I did next?  “TIME TO GET UP, RYAN.  WE NEED TO GET UP RIGHT NOW.  WE HAVE A DR APPOINTMENT.  GET UP.  WEAR THESE CLOTHES.  EAT THIS FOOD.  TAKE THESE MEDS.  RIGHT NOW.  GET A MOVE ON!!!”

Ryan didn’t want to go to the doctor, and he didn’t even KNOW about the skin test.  But off we went, ZERO choices given.  Got there for him to find out he was getting stuck with basically 20 needles, all at once, which made his back itchy and he couldn’t put his blanket over his shoulders to comfort himself.  He couldn’t itch at it.  He couldn’t lay on his back.  Finally time was up, and they wiped him off and put cream on it.  We went home.  I had a to-do list of 11 things, some on the phone and some I had to actually go do.  Shawn and his girlfriend were hanging out here, and if I don’t watch him, he will bother them all day.  What ensued then, following him being allowed to hang out for a few minutes, was 3 hours of me trying to do phone work and at the same time keeping Ryan from pestering Shawn.   It was a mess.  I had planned on being able to run the errands between 3 and 5, while he was at therapy, so at 2:30, I told him to get dressed (like I said, it’s freaking HOT, so all he had been wearing was his tank and underwear), and I set about getting myself ready.  When I emerged and looked at him, he had handlebars on his butt.

We got to therapy, only to find out that yesterday was not his counseling day (I still don’t understand how I had that wrong), so that meant he was going to have to LEAVE a place he didn’t want to be in the first place (and come back at 4) but since he was THERE, he wanted to STAY, to go run at least ONE of the errands.  So we went, and then I told him he had to go BACK.  After therapy I picked him up to go get ready for Bible School.  He’d been waiting all day to go sing songs, so this was an easier transition.  I got him into the “right” shorts, right side out, but he still insisted on sandals on the wrong feet.  I gave in on it.

Got to Bible School, only to find that there was to be no singing.  But guess what?  You don’t get to do what YOU want, Ryan, but here.  Eat this food.  Do THESE activities.  Sit in THIS chair.  Behavior disintegrated as I sat and watched.

We got home, and his phone died.  That was it.  Game over.  Complete meltdown.  45 minutes of crying total.  A whole day of being told what to do.  A whole day of no choices.  Of being managed, and of literally NO REWARD.

Shawn was finally able to quiet him.  Finally he slept.

Today, I asked him what he wanted for breakfast.  Asked if he wanted strawberries or bananas in his cereal. Asked which shoes he wanted for therapy.  Let him choose which blanket, which snake, which device.  I chose his clothes.  Told him we had to go to therapy, but he could choose which car.  And as we walked out the door for therapy, on time, in the clothes I chose, I noticed that……

his sandals were on the wrong feet.

I, and he, have bigger battles.  He has battled Leukemia twice and beat it back.  He battles a developmental delay that will never go away.  He battles late chemo effects, some of which include sensory processing issues.  His choices are limited.

So guess what.  If you see my kid ANYWHERE wearing his headphones, watching YouTube on his phone, with handlebars on his butt and holes in his shirt where tags were ripped out and his sandals on the wrong feet, leave him the hell alone, and don’t judge either of us.  We are busy slaying monsters, and I AM THE ONE WHO LET HIM OUT LOOKING LIKE THAT.

If you see him appropriately dressed, minus the headphones, wearing shoes that tie, minus his fuzzy blanket, you can probably safely assume that I have evaluated the day and judged it safe to impose my choices, the ones society considers “appropriate”.  Chalk one up for me, but don’t be deceived…the “stuff” is close by, because triggers happen in life.

The Year of Shawn

It would be incredibly remiss of me to leave this blog post out.  In any Special Needs family that includes siblings, this “year” is going to happen.  Your neurotypical child’s senior year in high school.  Bittersweet doesn’t even begin to cover it.  In some ways, depending on the circumstances surrounding your special needs child, it will seem as if it is your only chance to experience the ride.  I told Shawn at the beginning of this year that he would just have to bear with me, because while Ryan will also have a senior year, his is going to look very different, so this is my one chance.

During Shawn’s senior year, Ryan turned 12.  With this birthday came puberty, and a whole boatload of behavioral stuff.  Additionally, Ryan continues to have complex medical needs.  As a result of this little cocktail, chaos ensued.  It was the year of Shawn, and everything else be damned.

Ryan’s medical concerns became at once an escape for me and a trigger for me.  His behavior escalated as I became more and more focused on Shawn’s college applications, college music auditions, senior nights, graduation, performances and competitions.  Once Shawn decided to attend college out of town, 9 hours away from me, I became hyper focused.  Mattress toppers, financial decisions, medical care, total incoming freshman college mom frenzy and anxiety.  And Ryan’s behavior continued to escalate in direct response to my level of focus on Shawn.  Whereas it has historically (and quite unfairly) been Ryan who receives the immediate attention, suddenly the roles were reversed.  What Shawn wanted, Shawn got.  And he got it regardless of Ryan’s opinion on the matter.  Ryan got drug all over hell and gone some days, as I rushed around blindly making sure I didn’t miss one moment of Shawn’s senior year.  I made sure only that it didn’t interfere with Ryan’s medical care.

Shawn is 6 weeks from beginning this new chapter in his life.  We are in a holding pattern of sorts, doing the things that are needed for him to go away, yet doing much nothing, too.  Counting the days, pretending every day is nothing special, when, in fact, every day is EVERYTHING SPECIAL.

When Ryan was diagnosed with Leukemia, both times, when we came out the other side, there was Shawn, with needs, with accomplishments, with things that had to be attended to, now that the “Years Of Ryan” were done.  Blessedly, Shawn came out the other side fairly intact.

When we drop Shawn off in August, and we are out the other side of the Year of Shawn, boy am I going to have a mess to clean up with my youngest son!  But I can and will tell you that I’m OK with this.  I don’t regret the way I handled it.  This year was a gift, and believe me when I say to you that there have few gifts greater than this one.  We are in the very last few pages of this chapter, and they are turning fast.  There is something wrong with time.

But when our children are born, our dream for them is that they will follow their dreams, live fulfilling lives.  While my heart breaks over this ending, it rejoices that Shawn has a dream, and that he has the ability to follow it.  To make it come true.  So cheers…here’s to new chapters, new beginnings, dreams coming true.

Also, may God help me, because my next chapter is going to start off really messy.

Inside Out But I’m Doing Ok

It has been forever since I have written a blog post, but this one has been calling to me.

This morning I sat in Ryan’s awards assembly at school.  A week from today, Shawn will graduate from high school.  I have had to parent these two children through school at two polar opposite ends of the spectrum, and often this results in scrambled brains.  I am part of 2 parenting groups on social media, one for parents of teens and one for mothers of children with Down Syndrome.  As part of these two forums, I have been exposed to views, situations and ideas that are well outside my viewpoint.  I know that my way is not the only way, my way is not necessarily the “right” way, and I guess that it is also not the “mainstream” way.  I didn’t force a parenting style on my kids, the way I have chosen to parent them was forged from the circumstances we found ourselves in.  I have read a zillion memes, posts and comments about kids these days, and I have really thought about teens in particular, about the world they are taking off in to, about how society sees these kids.  I would like to share some things I’ve learned from my own journey:

1.  Today’s teens are not lazy.  Today’s teens are under more pressure than past generations.  They are held to higher standards.  They are tested till they can’t even see straight.  Social pressures have evolved.  Social media highlights the “bad”, rarely focusing on the great things teens today are doing.  As they called out AB and A honor roll names today at Ryan’s assembly, I remembered when Shawn was in elementary school, and the names that were called at those assemblies.  Those kids are graduating next week.  They have done big things.  They are going to Harvard, they are going to UT, they are going to UNT, they are going to UTEP.  They are working 40 hours a week while they are still in school.  They are in NHS.  They are taking care of ill parents, of disabled siblings.  They are learning who they are, preparing to take off on their own.  And y’all know what??  It is going to be OK.  These kids are thinkers, and they are going to be blazing trails and setting the world on fire.  You just watch them do it.

2.  This topic is so touchy, and I’m aware I’m drawing a giant bull’s eye on my forehead.  But here we go.  Video games.  Shawn’s video game time (gasp) is not limited.  I don’t choose his games, I don’t limit his time, I don’t throw a big fit about any of it unless he wakes Ryan up with his hollering.  He does the things he is supposed to do, and as long as he does, I’m not going to interfere in how he spends his leisure time.  He is not taking his gaming system to college with him.  I know, because I asked him if he wanted a travel case for it for Christmas last year and he said no because it was not traveling.  And I’m gonna go ahead and say it…his choices in video games, and yes, he plays shooting ones, have not made him more inclined to shoot things in real life.

3.  ADHD is real.  Shawn forgets things.  He forgets lots of things.  He forgets IMPORTANT things, things like his cap and gown on senior class picture day and his drums on his way to the homecoming parade.  He forgets his music before concerts and competitions.  I take him his forgotten items.  My days are numbered with this kid, and I will take every single opportunity to connect with him.  Even if it’s because he forgot something.  The other day, when I took the forgotten cap and gown, I had the opportunity to watch him climb the steps to the band room with it.  I took the moment to reflect on other times he’s walked toward something…kindergarten, the band room at Scotsdale, the aisles at awards assemblies.  Yes, he has to be responsible, and guess what, at NT, he’s gonna have to remember his stuff, because I won’t be there.  So soon enough, y’all.  It will only take once or twice having to tromp back to his dorm from across campus before he learns to stop and think.

4.  I cook. I clean.  I do the dishes.  The boys pitch in when I ask, but let me explain.  I have been a stay at home mom for the past several years.  I have cooked a hot breakfast every morning for Shawn since the summer of 2016.  Shawn gets up before dawn more often than not.  He has typically been out the door before 7.  Lots of days he’s not home until after 5, and during marching season, he was at school from 6:30 in the morning until 8 or 9 at night, and sometimes even later than that.  I don’t know what he’s eating all day, can’t control it.  But I can make damn sure he walks out my front door fed every morning.  He knows how to cook, how to do laundry.  But there’s absolutely no reason that he has to do those things before the sun comes up or at night when he gets home and still has hours of homework. I’m home, I’m Momming.  And he will be better for it, not worse.

5.  Tracking apps like Life 360 and Find my Friends are controversial.  To each his/her own.  I love Life 360.  I have Shawn’s permission to use it.  He installed it on his phone.  However, we do not discuss it.  I do not use it to “catch” him doing something.  I use it to put my mind at ease if my anxiety gets away from me.  Sometimes it does me more harm than good.  But generally it runs quietly in the background of our lives, making things run more smoothly.

6.  This generation is very good at expressing themselves, at being who they are, at standing up for what they believe.  Of all the parenting lessons I have learned with Shawn, this is the one that stands out.  Kids say stuff for shock value.  They toss ideas out to test us.  They formulate plans that, as adults, we feel are questionable.  I have learned to KEEP MY FREAKING MOUTH SHUT.  I do not tell Shawn no.  I am aware that this has the potential to backfire.  What I do is LISTEN.  HEAR ALL the words.  Watch his face.  His body language.  And WAIT until I am asked for my opinion.  Let me tell you the things Shawn has NOT done after suggesting that he wanted to do them.  Not once did I forbid him.  I did offer my opinion when asked and I did ask questions that helped him think things through:

*Organize a Pro gun rally (2nd amendment believer)

*get a tattoo

*apply to college at Berklee College of Music

*Declare a major in Percussion Performance (Bachelors will be Music Education, THEN Masters in Performance)

All these things were tossed out by him,  and after discussion, appropriate decisions (read as DECISIONS THAT MADE ME HAPPY) were made.  I haven’t HAD to say no because he’s made good choices, but I know that if I start with the no stuff, that’s just going to rev him up.  I’m telling you, they are thinkers.

7.  The process to send your child away to college is designed to be a royal pain in the ass so that by the time you drop that child off you are so over the whole thing you are just grateful it’s finished and they are staying and you can finally stand the hell down.

8.   This is a Special Needs blog, and so for this last thought, I want to address some things about Disabilities.  On one on my groups, an autistic child did not want to attend a formal event because formal clothes caused him pain.  I am battling clothes and shoes with Ryan right now…he won’t keep them on.  He wears them at school but the second he’s through the door, most are coming off.  And I can guarantee you that he would not be excluded from an event based on the ability/inability to wear “accepted” outfits.  He dressed up today for his awards assembly, he had on a very lightweight shirt and tie, but he was in navy, elastic waist khaki type pants and black tennis shoes.  He looked very nice.  This is what Sunday Best looks like for him.  The other day, the Eastwood drum line performed at one of our local elementary schools, one where one of Shawn’s special needs drum students attends.  After the performance, Shawn went to talk to the kiddo, who was on major sensory overload and did not interact well with Shawn.  Shawn told me about it, and I talked to said kiddo’s mom to let her know that he’d had a tough time.  When she asked her boy, he said he’d not even realized it was Shawn, because he was dressed different.  Mom had not been given the heads up that there would be a noisy event at school that day, so her kid was unprepared.  He will not be unprepared again.   There were 2 awesomer moments at the awards assembly (all the moments were awesome, but 2 took the cake).  One was the single 4th grader who made the A honor roll all 4 grading periods.  The other was an autistic little girl, who ran up to the stage for her award, and when her mom went up to take the picture of her, she said UH-OH!  And I can guarantee you I was not the only one who burst into tears.  She was so happy!  Ryan took a bow before he left the stage with his citizenship award, I had told him he could do it.  Shawn always gets to bow, and Ryan gets left out.  Today was his turn.

This parenting gig is no joke.  It’s not for the weak.  There’s no manual, no “Parenting for Dummies” (wait, there isn’t, is there?).  There’s no way to know, while we are in the trenches, if we are getting it right.  We just have to take the next right step, pray a lot, and keep the coffee, wine and Xanax flowing.

 

 

 

“It’s the Soul Afraid of Dying that Never Learns to Live”

I suck at titles, so it is easier for me to borrow someone else’s words and give credit than to spend 10 hours thinking of the perfect title.  This one is taken from “The Rose”, by Bette Midler.  Whether it is the essence of this post remains to be seen, but it’s what I want so it stays.

We are at Camp Sunshine this week.  Shawn is here with us.  Last year he didn’t come, and I wasn’t sure he would really embrace this week, but to start at the end, at lunch today he had gone back to our room for something, and I was still sitting at the table when he came back.  He stood there, looking at me (it was like 12:57), and finally I asked why he was staring at me.  He says “Aren’t you going to go sign me in?”  I was like I still have three minutes, but he was READY RIGHT NOW, MOM!! At that moment I knew he was won over.

Shawn is displeased when I write about him here, so don’t tell him I did.  If I ever write a book, I will have to get his permission to include his story.  But for today, it is on my heart to do this.  One of the hot topics in the parent groups here is siblings.  I have been struggling with my emotions regarding this area, and I was anxious for yesterday’s session because I know we would be covering it.

When I was called on, my first words were “It is heartbreakingly difficult to tell your child, especially when he is old enough to understand, that his brother has cancer.  But to have to tell them AGAIN, once you know what is coming, that is unspeakable.”  I remembered Dr. Prieto coming into the parking lot at the hospital the very first night of diagnosis, as I stood there, trying to relinquish 8 year old Shawn to his father.  He told me to hug and kiss Shawn, that he needed to talk to him.  That was the first night of what would be hundreds of nights that I did not tuck Shawn into bed.  That I did not kiss him goodnight.  I don’t need to go into all the moments I missed, all the things I didn’t get to do, all the times he reached for me and I was not there, all the memories I didn’t get to make.  The guilt that I carry is immense.  I try all the time to make it up to him all the time, but there is no way.  We can’t turn back time, and even if I had a chance to do it again, I don’t really know how I could possibly do it differently.  I did the very best I could.  I continue to do the very best I can.  Then someone else spoke, and her words were these:  “I told my children’s teachers that I was no longer the parent I was last week.”  How easy it is for others to judge our parenting.  How easy it is to say that our way is wrong.  That we spoil our kids.  That we don’t set enough boundaries.  That we just aren’t doing it “right”.  And blessedly, I don’t care what people think of my parenting.  I do it my way, based on my children’s needs.  I do try and talk to Shawn, particularly as he gets older.  I need to make sure he understands, medically, emotionally, why things are the way they are.  But too, it is very important to just listen.  Because sometimes the things you want to communicate are not the vital, pressing things your child needs to hear right then.  If I am constantly talking at Shawn, I may miss what he is thinking.  This may be parenting 101, but often I forget, and I just feed him information.   So anyway, I am no longer the parent I was pre-diagnosis.  I am also not the woman I was pre-diagnosis.  The mom that was speaking said something else.  She said “Since I knew I wasn’t going to be able to be there for my other children, I put people in their lives that I could trust.”

********DISCLAIMER:  THIS POST IS ABOUT ME AND MY FEELINGS AND MY HEARTBREAK.  IT IS NOT A REFLECTION OF THE OTHER PEOPLE IN SHAWN’S LIFE.  Shawn’s needs were met.  My parents were there for him.  But he was missing one thing, the ONLY thing that no one but me could give.  He was missing his mother.  I did put people in Shawn’s life that I could trust.  His homework got done, he was well fed,  he got to church and his baseball games and events at school.  And yet I grieve for what he lost, for what I lost.

Fast forward to this week.  In group, the social worker spoke about how important it is for our children to see us laugh and play and be silly, and so I have worked hard at that.  But as I got a little ways  in to the week, it occurred to me that there was a bigger need at work here, and that was the need to solidify my relationship with Shawn.  Ryan has done what Ryan does, Shannen has had him, and this has given Shawn and I a rare opportunity.  We have taken him with us to play ball and such, but I have allowed him to just watch, or to join other families within my line of sight.  We have eaten 3 meals a day together, the 3 of us.  I have thrown a football with him.  Shot baskets with him.  Played checkers.  Took out a paddle boat.  We sat together at the talent show, and this morning we played kickball with another family.  He has seen me laugh.  Today he saw me laugh HARD when he got his foot tangled up in the net while we were playing kickball.  As this week went on, he quit trying to hide his smiles. This is something that I will never ever take for granted.

I could go on and on.  But I will end with this.  Yesterday we were talking about Ryan’s future.  It was a serious discussion, one we revisit every once in a while.  I was talking about how I don’t think (I did used to, but not so much any more) Ryan will ever live alone.  That is for another post, my thoughts on that, but yesterday I was explaining guardianship, and then Shawn said something to me that will stick with me forever.  And it was a total contradiction, but it is exactly what is in his head, and it shows that I am not the only one conflicted about how to handle Ryan.  The fire alarm went off immediately after he said it, so I did not pursue it, but that’s probably ok, because it was unexpected and I need to process it before I address it.  The second most interesting thing he said was “My kids are gonna have a really fun uncle!”  This is very likely true.

But then he said “What I hope is that Bella and I can finally create a stable environment for Ryan, one where he can just do whatever he wants.”  I don’t know what that means.  I hope I don’t have to get run over by a bus to find out.

 

 

 

 

 

 

 

 

 

My Internal GPS is Broken

This post today is inspired by Koreen Guillermo’s words this morning.  The title is borrowed from her, as is this first quote:

“The faith that seems so easy in the sunshine wavers in the darkness”.

She spoke straight to my heart this Easter morning, and not for the first time.

This has been a week.  Well, last week was.  And the one before that, and the one…never mind.  You get it.  But this past week was a bit more roller-coasterish than is typical, and we do roller coasters with the best of them.  Koreen spoke of rearranging furniture in your home, and how during the day it’s not problematic, but at night, in the darkness, it is no longer the safe place that it is in the light.

Our week was filled with therapy…OT, PT, Speech; filled with doctor appointments… Oncology clinic, neurologist, and suddenly, the pediatrician.  Bad financial news hit, and then we were notified that not only were we accepted to the oncology camp session I had applied for, our travel would be covered in full.  Up, down, up, down.  We had Easter dinner yesterday because my mother is having surgery tomorrow.  Ryan attended 4 Easter Egg hunts.  Oncology clinic brought nothing unexpected.

But Thursday my furniture got rearranged.  As a special needs mom, as a medical mom, you fall into a routine.  You know what to expect, you know where the sharp corners on the furniture are, you know where the potholes are on the route to the hospital.  Your GPS gets you to therapies, to clinics. And then the storm hits.  The lights go out, and you are left to fumble through the darkness, trying not to fall into this new pothole the storm just created.

Ryan had an “event” Thursday.  His exhibited some bizarre behavior, slept 17 out of 24 hours.  This is not my child.  His hands tremored.  He was oblivious to his environment.  I called the pediatrician’s office, hysterical.  They said I could bring him in, but that I would have to see someone named Jessica.  I responded that I didn’t know Jessica and Jessica didn’t know Ryan and then I hung up on the poor receptionist.  She, bless her heart, located my pediatrician, who called me, talked me down, and told me to bring Ryan in on Friday morning.  Which I did, and apologized to the receptionist while I was there.  She does not make enough money to have to put up with that sort of ridiculous behavior.  It is possible that Ryan had a seizure, a seizure not triggered by medication.  This would be unusual, and it is not a direction I really wish to go.  The neurologist’s office was closed Friday, of course, but I did reach the oncologist, who said that if there was further odd behavior, we would admit Ryan for observation, otherwise keep an eye on him, call the neuro Monday, and we will sort through it on Tuesday at clinic.

Ryan has been fine since then.  Me, not so much.  I was already stressed out, and the fatigue I witnessed Thursday sent me directly into a PTSD episode.  Zero to 60 in 5.2.  Do not pass go, do not collect $200.  All the cliches.  All at once.

A friend asked me yesterday how I was doing.  My answer?  I said “I don’t know.  I don’t know where the line is anymore.  I don’t know what is worth reacting to.  I don’t know when something is really wrong.  I don’t know what normal looks like anymore.  I don’t know when my brain is lying to me.”

It’s dark, y’all.  I’m scared.  I’m trying not to let that darkness suck me in.  Trying to reach for the light.  Trying not to bang into furniture that isn’t where it is supposed to be.  Trying to reset my GPS to find my way through.  It doesn’t take much rearranging to set me off course…and the dark may just hang around a bit.

But it is in the dark when my God shows up.  He is there, and He is constant.  He’s not hiding, not on the opposite wall.  Not in the other corner.  But it is hard to listen for Him.  Hard to stop stumbling around and to just be still and listen.  Hard to wait to see where this is headed, how I will find my way through.  While my faith may waver, I cannot function without it.

This Easter morning, I was reminded that the sun will come up.  The darkness will recede.  The storm will run out of rain.  And whatever arrangement our lives are in when the sun comes back up, my GPS will figure it out.

Then again, my internal GPS can be astonishingly unreliable…

Smile!  Happy Easter!!!

 

 

Special Needs Parenting: Today I Suck at This Job

It started last night.  I had a super productive day, felt pretty good about things.  I picked Ryan up from school and about an hour later I started having cramps, and although I wasn’t feeling too great, got the boys and the dog fed, and then got Ryan and Baxter medicated.  And then the wheels started to wobble.  Baxter gets “hot spots”, patches on his belly that are some sort of contact allergy.  Steroids are helpful for this, but they make him insanely thirsty and give him diarrhea.  He had gotten a steroid shot at the vet in the morning, and some allegry pills, which may also make him thirsty, since they are antihistamines.  In any case, Baxter is not overly concerned about where he uses the bathroom…inside, outside, he doesn’t care, and I have never been able to completely housebreak him.  So I walked him, and locked up, and sat down.  It was 7:04 pm.  At 7:06, he peed.  I cleaned it up.  At 7:10, he had diarrhea.  Twice.  On the carpet.  I cleaned it up. Throughout this, my cramps are getting progressively worse.   I sit back down at 7:24.  At 7:26, Ryan says he is ready for bed.  Now, this does not mean he is going to get in bed and lay down and sleep.  This means he is going to:

1.  Get tucked in in his bed.
2. Get out of his bed for a drink.
3. Get back tucked in his bed.
4. Get out of of bed to locate Snakie, who got lost during the second tuck in.
5. Get back in bed for a third tuck in.
6. At this point, I am to lay down as well (which was good, because by then I was in horrific pain and needed cool and still and quiet…I had taken stuff for my cramps as well by then).
7. Once I am comfortable (as comfortable as possible), Ryan gets back out of bed and gets in bed with me, which is so NOT what I need…knees and elbows and fidgeting.  I can’t switch beds, he will just go with me.  I can’t go on the couch, because he is “scary” if I leave him alone.  So at this point, I am in tears.  And in pain.  And feeling supremely sorry for myself.  I’m wishing that I could dump him off on someone just for one night, just till I feel better.
8. After about 20 minutes, he decides I am annoying him and he is going to get back in his own bed.  So I tuck him in his own bed for the fourth time, and get back in bed.
9. 5 minutes later he is out of bed because now his pull up is wet.  So I get up, change him.  Tuck him in a 5th time.
10. Get back in bed myself.  I’m still in excruciating pain, nothing I took is helping.
11. He is now out of bed AGAIN, because Snakie is MIA again (this is exactly why pacifiers have strings or clips of some sort).
12. Find Snakie, 6th tuck in.
13. Finally he falls asleep.

Eventually I felt better and was able to sleep.  At dark o’clock, he was back in bed with me, where we dozed and snuggled until about 9:30 this morning.  But I woke up short-tempered, and both child and dog were wound up.  More accidents, more diarrhea, 3 meals before noon for Ryan, 7 tape changes on Snakie.  I wanted to get Ryan (and maybe myself too), out of the apartament for a while, but my finances are precarious right now, gas is limited, my van is possessed by some sort of demon and in need of an exorcism, and even just taking Ryan outside to play is a chore because he needs help playing with others and he dislikes playing alone.  And today I am not feeling well enough to play outside with him.  I tried to take a shower.  While I was doing that he tore up the living room and Bax had 2 more accidents.

And I feel guilty.  Guilty because I don’t feel well enough to play.  Guilty for wishing I had somewhere to take him while I regroup.  Guilty because he is my responsibility and I am impatient with him.  Guilty because this is not his fault.  Guilty because today I am not enough and he doesn’t understand.  Guilty because I’m jealous of parents who can take their kid to a park and he will play nicely with other children.  Jealous of parents who can afford to hire someone to take their children to the park.  Jealous of parents who can afford to take their kids to Peter Piper Pizza and let them eat and blow off steam.  Guilty because I am jealous of parents who can send their child outside to play with minimal supervision.  Guilty because even if I had the money right now to go get my hair cut, or my nails done or have a massage I can’t leave him. Guilty because I resent the fact that I NEVER have just one morning when I can wake up on my own, at my pace, in bed alone.

And over it and under it and through it and around it, I am angry with myself for feeling this way, because there are so many parents out there who would give ANYTHING to have my problems but they don’t because they have lost their child.  This is called Survivor’s Guilt.

That doesn’t make me less exhausted or less guilty or less anything.  It is what it is, and it is something I grapple with on the days when I am a sucky mother.  But I know, too, that I tried today.  I tried last night.  I tucked my restless child in to bed 6 times.  I have fixed Snakie.  Cleaned up after Bax.  Fed my kids.  And I know they know I’m trying.

I don’t want y’all to be all sad about this…I want those of you in my shoes to know that you are not alone on the days you feel like you suck at whatever you are doing.  Also, I want to just say that those of you who know someone in my shoes, here is how you can help:

1.  Show up with coffee
2. Call and see if you can schedule a play date.
3. I probably wouldn’t saddle you with taking Ryan to the park because he is an escape artist, but I might go with you and your child.
4. Bring food over.
5. Gift cards are so welcome…for fast food, for books, Google play, Visa gift cards…anything we might use to just pop out for an afternoon, or a couple hours
6. Offer to stay with Ryan at my place so I could go run some errands.

Better yet, don’t offer, just do it, because most folks in my shoes don’t accept offers of help easily, but it is kind of hard to turn down help when it is on our doorstep.

***This is important:  I am aware of respite care.  I have been denied this service by several agencies, so this far it is not an option for us.

You Know You’re a Cancer Mom (or Dad) When….

I’ve been wanting to write this forever.  Initially it was going to be a compilation of things folks contributed, but no one contributed.  It’s OK, I can do it!!!

You know you’re a cancer mom (or dad) when…

1. You are out of Glad Press ‘n Seal because you used the last of it to cover the EMLA on your child’s port on the way to the ER last night.

2.  You check this week’s blood draw results like other people check the weather when making plans.

3.  You don’t see anything wrong with going to 3 different fast food joints (for one meal) while on a steroid pulse.

4.  The pharmacist knows you by your voice, and has your child’s birth date memorized.

5.  Your child, who can’t remember his math facts, can name and identify every one of his medications.

6.  The “group” has confused the medications so bad the hospital pharmacist is chasing you down the hall to sort it all out.

7.  Your child instructs the ER nurses on how to access their port, and knows what order vitals should be taken in.

8.  Your child has a specialist for every body system.

9.  You carry EMLA, tegaderms, and a thermometer everywhere you go.

10.  Doritos, chocolate cake and orange juice is a perfectly acceptable meal (I don’t CARE what you eat, PLEASE JUST EAT!!!)

11.  You tell the nurse at school that 100.3 is NOT a fever.

12.  You know what Methotrexate-Induced Leukoencephalopathy is, and the receptionist at the neurologist’s office does not.

13.  Wonky IS a medical term.

14.  You swear you are going to throat punch the VERY NEXT PERSON who says “I don’t know how you do it!”

15.  Your medicine cabinet rivals the shelves at CVS.

16.  You know what I mean by “those thingys that go in the tops of medicine bottles”.

17.  You have, in the closet, 67 boxes of unopened crayons, 93 coloring books, and 15 fuzzy blankets.  You also have 6 Build-a-Bears, complete with IVs, a chemo duck, and a Monkey in my Chair.

18.  The hospital nurses know your child’s favorite foods.  And the names of their pets.  And what you look like in your sleep.

19.  While out running errands, your child yells that he wants to go home, and he means the hospital, not your house.

20.  You could add 10 more items to this list (and I welcome you to do so!!!).

Please Quit Licking the Dog

I have had this on my mind a lot lately, and I am frustrated because I am not able to convey what I am feeling.  As I drove home from Oncology clinic yesterday, listening to Ryan jabber mindlessly, I was reminded yet again of the huge difference in the developmental levels of my boys.  They are only 5 years apart, but it’s more than that.  It’s an ocean.  It’s an eternity.  It’s parallel lines, lines that will never quite meet.

I wonder sometimes about how special needs parents reconcile this.  Ryan is 11, should be in 5th grade by now, but due to retentions because of school missed due to Leukemia and chemo, he is only in 3rd grade.  This is OK…it’s what is best for Ryan.  Developmentally, he isn’t even typical of a 3rd grader.  I’m not saying this is awful.  I’m just saying it’s hard to face sometimes, and it’s hard to keep up with ALWAYS.

Let me toss out a few examples:

1.  One morning I had to put Shawn on a plane to San Antonio.  He flew with his teacher and a classmate.  I wanted to grab him and beg him not to grow up so fast, not to be so independent.  An hour later, I dropped Ryan off at school, where his teacher told me they are having difficulty with his independence.  He won’t do ANYTHING by himself without one to one attention.  I am begging him to be more independent, wishing he would grow up just a bit.

2.  Shawn will be a senior next year, so college brochures are strewn all over the apartment.  We spent an hour the other evening discussing them, and then I grabbed Ryan for his homework, which was sight words.  Hot, pot, not, cot…

3.  Career choices must be discussed with Shawn.  Midway through the most recent conversation, I looked up and Ryan was licking the dog.  I had to stop with Shawn, and have a short conversation with Ryan about why it’s not OK to lick the dog.

4.   They like me to listen to songs they like.  Last night Shawn put headphones on me so I could hear this new composer that he found that writes music in 11/8 time.  Ryan asked me a few minutes ago to listen to Ernie and Bert sing Rubber Ducky.

If this were simply an age thing, as Ryan gets older, the gap would narrow, until they are both in their 20’s and it would be gone.  But that’s not the case.  It’s never going to be the case.  Shawn will never have a sibling his age, it will never be quite even.  Shawn will eventually be Ryan’s guardian.  And this, y’all, this just breaks my heart.

Shawn and I had a conversation tonight about things he might do different as a parent.  I asked, because I am curious.  He said that the number one thing he would do differently is make sure that his children have a childhood.  Heart broken much?  I wish that I could go back, wish a childhood for BOTH of them, one that wasn’t tarnished by disability and disease, that fairy tale childhood we all dream about.  Shawn knows, as do I, that I have done the very best I can do given the cards I have been dealt. That doesn’t always help much.  Shawn has learned a lot about life due to Ryan’s Down Syndrome and his Leukemia.  Life lessons that he will need later.  But yes, his childhood was ripped from him.

Ryan worships Shawn.  But they are stuck right now at an uncomfortable place. Because Ryan is not a typical DS kiddo, Shawn’s expectations are high.  Shawn has little tolerance for some of Ryan’s more annoying behaviors, and he is still jealous and resentful at times.

Today he was upset because he has a sublingual nodule that he wants removed and he wants it removed RIGH NOW.  But we have to go through the process, and he said today how it’s not fair that Ryan never has to go through the process, everything is dealt with immediately.  I told him that if he had cancer everything would also be an emergency and dealt with immediately, but since he doesn’t he just has to jump through the medical hoops like the rest of us mere mortals.  He knows Ryan is OK right now, so he is safe lashing out at me a bit.

I don’t know how much the gap will ever narrow.  Shawn is going to be more of a parent to Ryan one day then a brother.  And just right now, I can’t reconcile it, I can’t swallow it, and it is not OK.  I can’t change it, but at this moment in my life, it is just not OK.

Is That All For You Today?

I was a Special Education teacher for the majority of my career, spending my last 4 years in a high school life skills classroom, which included students 14-22 years of age who had moderate to severe disabilities.  One of the purposes of the unit was to prepare my students to function in the community.  This includes using public transportation, eating in a restaurant, and making purchases.  It is this last choice that we are going to talk about today.

In the student’s IEP, the goal may read “_______ will purchase an item in a store with no more than 2 verbal or visual prompts 85% of the time.”  Following the goal are objectives:  what has to happen in order to master the goal.  Obviously, students must choose an item, hand the cashier enough money, wait for their change.  All there is to it, right?  Um, NO.  Watch this:  When I purchase an item, ALL the following things take place.

1.  Select the item

2.  Get in line.

3.  Wait your turn.

4.  Greet the cashier when it’s your turn.

5.  Put your item(s) on the counter.

6.  Listen for your total.

7.  Hand the cashier the appropriate amount of money.

8.  Wait for the cashier to hand you your change, your receipt and your purchase.

9.  Thank the cashier.

10.  Get out of the way.

11.  Put away your change and receipt.

Who knew?  This process, which seems so routine for most of us, is fraught with land mines for our ADHD kids, our kids on the spectrum, our sensory processing disorder kids… Think about how you feel when the store is too hot, the line is too long, the guy ahead of you is making you batshit crazy.  Times that by 1000.  That’s our kids.  Look at all the skills we apply.  Turn taking.  Greeting appropriately.  Communication.  Math skills.  Decision making skills.  Every single step listed has to be pretaught, and mastered, in order for a successful experience.  Yes, our kids have watched us buy stuff. For most kids, that’s enough.  I never had to formally teach Shawn to buy stuff.  But Ryan…let me tell you about Friday.  Because even when you think its OK, you should expect the unexpected.

We stopped at the Valero for gas.  Approximately 0.5 seconds after I paid for the gas, Ryan says “I want apple juice.”  I looked around the store.  It was empty. The cashier was friendly. I had a couple dollar bills in my purse.  We’ve been working on parts of this.  Let ‘er rip, I thought.  It’ll be fine, I thought.  So I said “OK, Ryan, go get an apple juice.”  I watched, he returned with apple juice. #1 – 100% today.  I handed him $2, and said “go get in line”.  I moved off to the side to watch.  He went to the cashier.  #2 – 100%.  The house is rocking, right? Well, no.  Because then it broke down, and guess what, it’s my fault.  I made an assumption.  The cashier asked him for the juice.  Radio silence.  Ryan just looked at her. She tried again, reached her hand out ( perfect visual prompt).  He gave her the money.  She asked again for the juice, at which time I verbally prompted: “Ryan.  Give her the juice.” He did, but why was this a problem?  Well, we do a lot of our practice in the Bistro at Children’s.  In the Bistro at Children’s, they don’t scan the items.  Ryan never has to let go of his juice.  What about the grocery store?  Well, we have a cart.  Item goes from hand to cart, THEN to cashier.  It’s not in his hands at the register.  Small detail, but important distinction.

So now the cashier’s got the juice, she’s got the money.  I stand down a bit.  And then it happens.  I hear her say “Is that all for you today?”  I register it a second too late.  Ryan’s eyes flash around the store and land on the bin of basketballs.  And he says “No.  Wait.  I need a ball.” And he’s off.  And I’m off.  I’m closer, so I get between him and the basketballs.  Blessedly the store is still empty, so I can take the time to explain to him that he only has $2, we aren’t buying basketballs because he has 3, go back and get the juice.  He doesn’t move.  I give a choice…you can go back and get the juice or we can leave without it.  But he’s gearing up for battle.  I’m down at eye level, because WE ARE NOT GOING TO HAVE A MELTDOWN IN THIS STORE RIGHT NOW, RYAN!!  I’m looking for compliance:  “Ryan, answer me. Do you want your juice?”  “YES”.  Now a short, clear command:  “Go get your juice”.  Nothing happens.  I hold my line, my breath, my position. Absolutely silent. After 10 seconds or so, which he needed to process, he returns to the counter for his juice.  I follow, now I’m in his space, because we aren’t starting over.  The cashier hands him his juice, tries to give him his change, but he’s not paying attention, and now it’s on the floor, and customers are coming in.  Usually I have him pick up what he drops, particularly coins, because hey, good fine motor activity.  But he needs big praise for compliance, and he needs it RIGHT NOW, so I pick up the change, thank the cashier, and walk out telling him what a great job he did picking his juice, thanked him for making a good choice, high five him, put his dimes in his pocket to put in his Batman bank later.

The cashier stayed in her routine, which is important. Ryan answered the question with a perfectly appropriate answer, unlike at church when Daniel asks for joys and concerns and Ryan raises his hand and asks to pray for Rice Krispies.  The cashier doesn’t need to treat him differently.  They don’t need to be friends at the end.  She did exactly right.  Me, an expert in task analysis, I missed a couple land mines.  So we will practice a little more and then we will try it again.

It’s never “just” anything in our world.  What a lot of folks take for granted is a huge undertaking for us.  And for our kids.  I almost drove off without the gas (which I have been known to do with fewer distractions than I had today).  We avoided a meltdown, barely.  I gave it a 50% mastery in the end, given that the last part completely unraveled.

Be patient with each other, y’all, and be kind.  You just don’t know what each other’s lives look like.

A Little Bit of Ryan in My Life

I have been absent for awhile.  It has had to do with a number of things…moving, Ryan’s cancer, Shawn’s achievements, general busyness, a few depressing attempts to write, and the fact that I have not built up the audience I would like for this blog.  So I quit.  But I’m ready to start again.  We will see where it takes us.

Being the parent of a special needs child is difficult.  Being the parent of a child with a chronic life-threatening illness is difficult.  Being a single parent is difficult, and being a parent with anxiety, depression, PTSD and chronic pain is difficult.  Being all of the above at once…well, if there is a word to describe that, my picture will be under it.

I want to talk today about labels.  When someone asks me to describe Ryan, the first words out of my mouth usually have to do with either the Down Syndrome or the Leukemia.  If you ask the people in his life to describe him, they start out with a description of the child himself, minus the labels.  So I thought that today we could address why this happens.

It happens because parents of special needs children bear the brunt of the diagnoses.  We administer medication.  We sit in the doctor’s offices and hospitals.  We sit across the table form our child’s teachers and discuss our child’s disability and all the things they still can’t do.  We cart them to speech therapy and occupational therapy and counseling and physical therapy.  We push the wheelchair.  We feed through NG tubes.  We connect and disconnect IV lines.  We are entrenched.  Our daily lives revolve around our child’s needs. In my case, I can’t work, don’t have a social life, my only time with other adults is church or the hospital.

So when someone asks me about Ryan, I tell them the things that are second nature.  My answer might go like this:

Ryan is eleven.  He has Down Syndrome and Recurrent Leukemia.  His immune system is compromised, he has peripheral neuropathy and transfusional hemochromatosis and methotrexate induced leukoencephalopathy.  He has a substance induced (steroids being the substance) mood disorder and anxiety and ADHD.  By this time, the person who JUST WANTED AN IDEA OF WHAT TO GET RYAN FOR CHRISTMAS, FOR CRYING OUT LOUD , has tuned out.  Along with not knowing what 97% of those words mean, it wasn’t what they wanted to know anyway.

Instead, this is what I should be saying: Ryan is eleven.  He is the most loving child I have ever met.  He loves music and singing and dancing.  He loves to play basketball and soccer, and he is besotted with his dog.  He enjoys telling knock knock jokes and the fact that he has no idea what he is talking about just makes them funnier.  He likes to play animal sound guessing games when we are in the car for long periods of time.  He likes the Wiggles, Sesame Street, wrestling and Steve Harvey.  If you want a hug, he’s your guy.  Ryan blesses the lives of everyone he touches.

It’s hard for parents to see beyond the labels sometimes, hard to switch from just surviving to true enjoyment of all the wonderful things that make your child a treasure.

Don’t overlook that, y’all.  Don’t do what I do and present your child as simply a sum of diagnoses.  He or she is so, so much more than that!!!