IEP, Year Two

I was attempting to borrow trouble before it was our time.

I had nothing to worry about this year, as it pertained to Kiran’s IEP meeting.  He truly has a fantastic team in place, and they all really give me the feeling they have his best interests at heart.

It helps that the preschool environment is inclusive by nature.  It will get harder, but it doesn’t have to be harder now.

I felt heard, respected, and like part of the team.  I was pleased with members of the team that spoke up to ensure things were being addressed clearly and documented properly.  All of my concerns and suggestions were readily accepted and will be put in the document.

I still need to educate myself more on this process and this document and what it will look like moving forward.  I need to educate myself more on what inclusion could look like for Kiran, and I need to prepare myself to respectfully advocate for it.

I didn’t put a lot of thought or effort into this IEP meeting – It was a last minute list I threw together.  It can’t continue that way.  He deserves more.  And it will get harder.  And he will need an advocate.

And that’s my job.

But for now, here’s to another great year with a great team – looking forward to some awesome progress this year!

Advertisements

Perspective on a Monday

A couple short hours ago, I wanted to hide in a closet equipped with ice cream and wine.

I had neither ice cream nor wine, nor the time or freedom, so I kept on with my Monday.

Let me tell you about it.

Remember Sunday night anxiety?  Ever-present these days, and, come to find out, far worse when you’ve come off a week of Kiran illness and haven’t left the house much.  Life is always hard, but when you get to kinda hunker down at home and ignore some of the hard parts for a week….it becomes even more daunting to have to face it.

Still, the morning started off well.  I forced myself out of bed with my 6:30 alarm – Dad’s weekend with Kiran, so I dug right into schoolwork.  I was getting things done this morning…and then I looked at my phone at about 10:00 and realized I missed an appointment (for myself) at 9:30.

This never happens.  I mean never.  I am the calendar queen, and I pride myself on that.  I live and die by my calendar.  If it’s anything, it’s there.  I usually look at it every night and first thing every morning, so I don’t forget anything.

I’m off my game.  It’s gonna cost me more in cancellation fee (no-show fee) than the appt would have cost had I gone and actually received the beauty service.  Great.

As I’m going to pick Kiran up, I realize – again, now that I am scouring my calendar for anything I may have missed – I forgot to let his waiver case manager know about his IEP meeting.  It’s tomorrow morning.  I text her and email her quickly, as soon as I realize my mistake.  Why are these things happening to me today?  Thankfully, she actually thinks she will be able to make it.  And she’s not required to be there – it’s just nice to have everyone in that room.

I’m not ready for the IEP meeting.  I honestly haven’t given it a lot of thought or attention.  Things are mostly good – I have some communication desires to bring up, but other than that…. But I know I need to start putting more time and effort into these meetings and this document.  It’s preschool right now, and his entire team is so great…but I have to start thinking about kindergarten and beyond.  I need to start learning more and putting effort in, so I am not completely overwhelmed when we have to start “the fight” of his education and inclusion.  I know enough to know it will not be easy, so I have to stop taking the easy path now just because we are happy with his preschool situation.

My mom is taking Kiran to preschool in the morning, because his dad and I will both be at the IEP meeting.  This means the morning will be cut short, and I have to have everything ready for him and the car packed before I leave.  Thinking I am being proactive and intelligent, I give Kiran his bath tonight.  I clean off his wheelchair from the weekend gunk tonight.  Then I put his clean little body into his wheelchair to eat his dinner.

And he coughs so hard at dinner that he throws up.  All over his clean self and his clean wheelchair…and now his bathtub pillow/mat is in the washer because I was going to get everything clean from the illness last week so I simply wipe him off best I can with wipes and resolve myself to give him another bath in the morning after all.  And now the wheelchair has to be fully taken apart to be scrubbed because vomit has seeped into the cracks and stinks.

So much for planning ahead and wrapping things up tonight.

I came near tears several times today and to tears once or twice.  It was a Mondayish Monday, the worst I’ve had in a long time.  Everything felt – feels – overwhelming.

In the midst of all of it, I kept coming back to this thought: We are here, together.  Everyone is alive.  No one is in the hospital.  Kiran is coughing still, yes, but he’s not sick like he was last week.

You see, I know it can be worse.  I know this isn’t the worst day I’ve ever had.  I know most of this stuff, in the grand scheme of things, doesn’t matter as much as it feels like it does.

Doesn’t mean I won’t gripe about my day.  Doesn’t mean I won’t raise my voice when, in the midst of the chaos, Kiran grabs hold of a piece of hair and pulls hard.  Doesn’t mean I won’t cry.  Doesn’t mean I won’t hope to God tomorrow will be better.

It has to be better…right?

Sunday Night Anxiety: Poop Edition

I struggle with anxiety, at various times in various ways.  My baseline is quite a bit higher, with both stress and anxiety, than I would imagine the average person’s is.  I have considered many different things at many different stages in my life to calm this anxiety, but I really just live with it.

Sunday night anxiety always seems to be greater.

Kiran has had an off weekend.  He woke up Saturday morning without his usual cheerful, happy-go-lucky demeanor.  I was watching him all day for other symptoms or clues that something might be off.  The only other symptom he gave me was being a prolific pooper.  He napped well, we ran a few errands, no fever, handled his food for the most part (He did have some “urpiness”, but that, along with the plentiful poop, I figured was due to him not having gone number 2 for a couple days.  Both happen sometimes.)

Today, the prolific pooping did not subside.  It got worse.  I was changing his diaper constantly, trying to keep him dry, clean, and creamed up.  It was no use, as his poor little bum got so red and raw, the skin was cracking open and bleeding.

This is not the first time, but I am pretty sure it’s the worst it’s ever been.

And I just feel so useless in these situations.  I can’t fix it.  I do everything I can – literally change his diaper every hour or more frequently, wipe as little as possible to clean him, let him air dry, lather him up with cream … his flinching in pain makes me cry for him.

And I can’t know – for sure – what is causing it.  He never ran a true fever throughout the weekend, and, other than being a little less outwardly happy and a little more cuddly/clingy, he hasn’t had any other symptoms to clue me in to what is happening in his little body.  I never know the right thing to do – and especially since I control how much food/liquid and what kinds go into his body – that is always a guessing game as well.  He got banana puree for dinner, through his tube, a regular illness go-to.  Just in case.

But the Sunday anxiety.  I am not ready to balance caring for a sick child alongside staying on top of my school work.  I knew it was coming, but I was hoping we wouldn’t be here yet.  I don’t know the right answer about school versus no school tomorrow, though I am leaning toward keeping him home with me.  If his demeanor hasn’t changed and his bowels haven’t slowed, I am not comfortable sending him to school.  I think a part of me has already made the decision to keep him home no matter what, because I really don’t know what we are dealing with here (but am assuming some type of viral gunk, and I don’t want him to share that in the preschool classroom).

For whatever reason – and there are many I am sure – Sunday night anxiety is the worst.  Any other night of the week, dealing with this same stuff, I would be handling myself better.  But tonight, it all feels heavier and harder, and the tears flow at a much lower threshold.  And I feel like I can’t make the right decisions and I can’t handle any of it, and I will fail.  At all of it.  Mom.  Caregiver.  Student.  All of it.

And I can know that I will wake up tomorrow, and I will handle it.  Whatever it is.  And we will make it through yet another day, however we make it.  But somehow, knowing that doesn’t ease what I’m feeling right now.

Update

I will probably write far less now that I have added online classes for me and am striving to strike a balance in all areas of my life.  It is good for me to be forced into a different identity other than “Kiran’s mom” – good for me to learn to prioritize other things.  Kiran is still almost always my first priority, but I am learning to prioritize my learning, other loved ones, etc in this growing process I find myself in.

That being said, I wanted to update on a couple things I am excited about for Kiran this fall.  Last week, he started his third intensive in the universal exercise unit (we lovingly call it “the cage”) for physical therapy.  We have high hopes for some strength and balance and confidence in his abilities to get to standing, stand, and even improve his walking attempts.  He has been doing such a great job so far, and we are just into week two.

It makes for a busy fall.  Preschool just started, and we are still getting used to that…and now we go to Childserve three afternoons a week, for a total of five therapy sessions there.  There are days I feel like all we do is run around.  And it’s only just begun.

We have had some really productive meetings with both of Kiran’s speech-language pathologists lately, from Childserve and the AEA, to get everyone on the same page with next steps.  As we start discussing trialing devices, we have decided to borrow a large ipad with his four core words on it (still plugging away at “go” “stop” “like” and “more”), along with a flexible mount that can be attached to his wheelchair, in the interim.  It sounds like that will be brought to school next week, and we will be allowed to bring it home to practice as well.  Kiran seems far more motivated touching a device and getting that touch/vocal feedback than he was with them just on a placemat in front of him.  It also works better than the little mac button we were practicing on, since ours can only do one word at a time and needs to be re-recorded every time.

There is a lot of hope and excitement for these steps forward.  Physical therapy and speech therapy are our biggest focuses this year.  He still has occupational therapy at both school and Childserve and vision therapy at school, but we are currently on a break from feeding therapy.  We really want to see where his gross motor skills can get to this year, especially in regards to walking, and we REALLY want him to start being able to communicate with us using language on a device.

Our team is seeing good things too.  As for physical therapy, our Childserve therapist let us know she does see him walking.  Someday.  Maybe with a gait trainer or walker for added support for the duration.  But walking.  This means so much, and we see his skills getting him there.  Our speech therapists are both seeing gains in cause and effect understanding, and our AEA SLP did a preference assessment for him yesterday with telling results.  In the past, Kiran hasn’t necessarily shown a strong preference for any item over any other, but he is growing in his likes and dislikes too.  It is amazing to see these preferences come out and to watch his personality really develop.

I’m just along for the ride.  This is Kiran’s path, and he is in charge.  It’s a long road.  It has taken us literally years of therapies and practicing at home and working hard to get here.  And it may take years to get to the next really big step on the journey.  But we are moving forward, and for that, I am thankful.

Three Year Heartiversary

Three years ago today, at this moment in time, I was where no mother wants to be.  Powerless.  Anxious.  Waiting.  Waiting to see if your surgery would be deemed a success.  Waiting to see if you would be the same boy I had to hand over to the surgical team that morning.  Waiting to see if you would be returned to my arms.

I didn’t expect today to be so emotional.  Something about this year is different from the previous years.  Maybe because so much has happened in the last three years.  Maybe because you are a big boy now, a preschooler, and as each year passes, I am more and more thankful for the experiences you are having.

I am more and more thankful that you are still here.

We went to Dylan’s Dragon Walk this morning, to remember and honor the heart angels, the ones who are not still here with us.  But they are.  You see it in the ways their families carry them around in their hearts, keeping them here with us.  Alive in them.  The strength of these families astounds me, and I was honored to attend with you today.  We blew bubbles in their memory, you and I saying as many names as we could remember, because it is so good to say their names and remember these warriors taken from us.

During the bubble remembrance, the song “All of Me” by Matt Hammitt was playing.  I can’t listen to that song without crying anyway, and the intersection of everything: your heartiversary, remembering the heart angels, the bubbles, the strength, the heartache, the joy, and you, wrapping your arms around me in the middle of it all….It’s a wonder I didn’t melt into a puddle of tears.

“You’re gonna have all of me
‘Cause you’re worth every fallen tear
You’re worth facing any fear
You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me
Is where I’ll start”

I have given you all of me from the very beginning, and I will continue.  Day after day.  It’s a long road, my sweet boy.  We are three years post open heart surgery and almost four years into your life on earth, but your story – our story – is really just beginning.  We write it every day.

I had another song that has been resonating with me lately that I wanted to share today, three years after the longest, most difficult day of my life.  This one is for both of us:

——————————————————————————

Fight On, Fighter by For King and Country

“I was there on the day that your world changed
You were scared, unprepared, for the heartbreak
Everything you knew faded out of view
Stole a piece of you
If I could, oh I would be a hero
Be the one who would take all the arrows
Save you from the pain, carry all the weight
But I know that you’re brave
Fight on, fighter
Don’t let anyone steal your fire
Fight on, fighter
The Spirit is alive inside ya
There’s a power that you hold, that you lock down
Let it breathe, give it wings, set it free now
Time to make your mark, break the prison bars
Show them who you are
Stronger than you ever thought
I know you’re stronger
Braver than you were before
You know you’re braver
Oh, no, you don’t have to be afraid
Together we’ll face it
So don’t ever stop, no matter what
‘Cause you’re gonna make it”
——————————————————————————
We journey together, my sweet, brave, strong little man.  You’re my favorite human, and you’ve taught me more – changed me more – than any other.  I am so lucky to be your mama … and I’m glad you’re here.

Take Me Out to the Ballgame

Kiran and I were able to cross two things off our summer bucket list on Friday night: We went to Kiran’s first ever Iowa Cubs baseball game, and we saw fireworks together after the game.

A lot was learned.  First of all, next time, we will make sure we arrive two plus hours before the start of the game.  It was a bit hectic finding parking, no accessible spots (or any spots) were close by the time we got down there, and we ended up trekking a bit with the wheelchair.  Thankfully, it’s doable, and we made it.

Couple other big takeaways: We will never sit in accessible seating in Section U again.  I actually wish the ticketing agent would have been more helpful when I called to purchase the tickets – it would have been helpful to know this is right by the dugout so kids would literally be swarming our seats at the end of each inning, trying to get players to throw them the game balls … Not super fun to have to be vigilant and make sure these ball-hungry kids treated the wheelchair and Kiran’s space with respect – and most of the game I was watching for foul balls flying, so I didn’t really appreciate the encouragement to have balls thrown in our direction either!

For the most part, it was a minor inconvenience, but it really started to wear on us around the seventh inning.

And finally, after checking two different women’s restrooms and resorting to changing Kiran on his changing mat on the gross bathroom floor, I saw the sign that stated diaper changing areas are at first aid, located behind home base.  Important info, for next time.

It was actually, truth be told, a fairly stressful outing for this mama, especially on a Friday night after a long week.  But man, when I saw his excited face once the fireworks display began, it was all worth it.  His dad always gets to spend fourth of July with Kiran, so I try to make a point to see fireworks with him another day.  I had all but given up on making this happen – and had kinda given up on an Iowa Cubs game this summer too – but I am glad we went.

It matters, which is why we do it.  Even when it’s stressful and it doesn’t go as planned and you have unforeseen frustrations and knowledge acquired too late.

But next year, when we take Kiran to another game, we know the drill.  So thankful to be able to give him these great experiences.

 

Preschool, Year Two

I have been in denial about the upcoming preschool year.  In denial, telling myself I wouldn’t be worried or stressed at all, because Kiran would be in the same classroom with the same teacher and some of the same associates, and I know it’s a great environment for him.  He is well loved, there, and they know him.  They know how to feed him via g-tube, they know how to read his body cues, and they know what an absolute joy and asset he is to their learning environment.

But.

The families are new.  The kids, new.  So while some of my fears and concerns are absolutely gone from last year’s school year, I still have plenty.

I would imagine (Kiran is my only, so I can only assume here) ALL parents hope similar things for their kids as the school year starts: They hope they learn and grow academically, yes.  I would assume they also hope they will be kind and make friends and feel like they belong in this world.

And that’s the part that’s harder.  Because I have those same hopes for a special little boy that this world is not made for.  Inclusion and celebrating diversity are becoming more of a “thing” in popular culture lately, as you see kids with varying abilities in inspiring commercials and as models – and as big stores are now carrying clothes and other products catered to a diverse group of kids.  And I love it.  I do.  It’s inspiring and people tear up and it’s oh so feel-good….

But it really isn’t translating to much of the real world, just yet.  The social bubble people put around us is real – it’s not just us; I’ve checked with other special needs families.  When people are uncomfortable or they don’t know what to say, they simply pretend we aren’t there.

I’m doing my best to break the bubble.  Fair or not, I know it falls on me.  I’m about the worst person it could fall on, too, because I am about as introverted and socially awkward as they come.  It takes a lot for me to walk up to a stranger and start a conversation, and small talk is excruciating for me.  But I know it starts with me.

And I know preschool is a great place to hone these skills, because it only gets harder from here.  As the gap of what Kiran can do and what his peers can do gets wider as he grows (I am not being pessimistic here – I know Kiran will continue to make progress, but I also have to be realistic that this gap will grow as time goes on), it will be harder and harder for him to make friends.  As much as I hate that, because I know he brings so much to the table.  It shouldn’t – but it will – take special kids who choose to befriend him and understand him and who will see his joy and spirit.

I can work myself into a panic with this.  I really can.  It was my biggest worry going into the school year last year, too, but Kiran was very well liked in the classroom.  Peers loved playing with him, and he made a long-lasting special, true friend.  I know it’s in the cards this year, too.  But it’s hard, starting out.

And ultimately, I know Kiran will never have a shortage of people who love him.  It may not be the peer friendships I long for him to have, but the love will be there.

————————————————————————————————————————————-

Oh, buddy.  Back to school night last night made me realize I am really not ready for this again.  My mama heart longs to protect you and shield you from the hurt … and yet, at this point, I carry it all for you.  So maybe I’m trying to protect my heart.  I knew what I was getting into, with this, when I chose to be a mom.  My heart is going to break – over and over and over and over again – but it is all worth it.  Being your mom.  Man, I am lucky.  I promise to keep pushing against the bubble, even when it’s really hard.  I pray you know how much you are loved as you go into this new year.  You’ve got this, Kiran.

Preparation

Kiran and I attended a book launch party this weekend.  An Iowa author, pretty well known in the special needs community, as her books are geared toward our families, co-authored a book with Dr. Gary Chapman: Sharing Love Abundantly in Special Needs Families: The 5 Love Languages for Parents Raising Children with Disabilities.

I haven’t read the book yet.  I tear up, still, thinking about the awareness this book could bring to the need to come alongside our families and love us, especially within the church community.

But something the author, Jolene Philo, shared struck fear straight into my mama heart.  She shared about a couple who are still caregivers for their son, who is now in his mid-30’s but has an intellectual capacity of about a five year old.  One way this couple loves him well is they allow him to still get in bed with them in the mornings to snuggle, because, as a five year old, developmentally, this is what he needs to feel loved and safe within his family.

My initial reaction was basically losing my breath for a minute.  That image, of my own son, grown, needing to snuggle with his mama – it’s just not a typical image most people have to imagine.

And I try not to think too far into our future.  I have to hope that I will continue to grow as Kiran’s mama – as I have so far these past four years.  I have to trust this journey, day by day, with Kiran, will continue to prepare me to be the mom he needs as he grows.

It may take me a minute, but I *know* I can love Kiran that well.  And I know that, should that time come, I will continue to love Kiran well.  However he needs me to love him, I will be there.

It’s a long road ahead, but we journey together.

Good Mom

I was told today, emphatically, by one of Kiran’s long-time therapists, that I am a great mom.  I have no idea how she measured this or what observations she made that determined this, but she was sincere.  And very sweet.

I often think to myself, when receiving this compliment, that it certainly doesn’t feel like it.  I hold so much guilt, daily, about not being enough for Kiran.

There’s never enough time.  The balance is off.  I don’t have enough energy.  I have too many household things to tend to.  The list goes on.

I didn’t invent mama guilt, but I have certainly perfected the concept.

I recently read something that talked about special needs parenting just being “more”.  And it is.

Because I am Kiran’s mobility, I can’t take him to the park and just say “Go play!” and sit on the bench to drink a latte.  (This should be the first line of my next poem.)

Because he is still learning to play, I feel guilty every time I just sit him down with a toy in front of him.  Inevitably, a couple minutes pass, and he has either 1) thrown the toy off to the side, out of reach (or at least out of sight, out of mind; object permanence isn’t a strong skill yet), 2) thrown his body back so he is lying down just playing with his hands or staring at the ceiling, 3) taken his glasses off and decided they make a tasty snack or 4) any combination of the above three items.

But tonight, as I brought him downstairs with the intention of reading books before bed, I noticed my forgotten pile of laundry laid out on my bed, waiting to be folded and put away.  I am not 100% in the healthy department this week, and I am feeling very rundown by the time Kiran goes to bed at 7:30 (a little early tonight, since I sat down to type this right after settling him in bed).

So, do you know what I did?  I thought to myself (which I don’t do nearly as often as I should): What would I do if he were a typical almost-4 year old?

Answer: I would say “Mama’s going to do laundry; you go play with your toys until bed.”

Because there is something about being done – as done as a mom ever is – with chores before the little one goes to bed.

So, I said that to him.  And I sat him on the floor where he could see me and we could chat, and I put a couple toys in front of him.

And – this is not always the case, as outlined above – he stayed sitting the entire time and even interacted with his toys more than he normally does before deciding he was done with them.  He grew frustrated with his banter at one point, and I gently reminded him I was doing laundry, and he could play with his toys until bedtime.  He only took his glasses off once, and I did correct that behavior.  But otherwise, he sat and played with his toys, and I did the damn laundry.

Easily half of the stuff I post on facebook lately has to do with inclusion and embracing differences and incorporating kids with special needs into the classroom.  And yet, I struggle with it in my own life.  In our own daily routine.

No, I can’t say “go play” at the park and just watch him from a bench.  I can’t say “go put your pjs on” or “go make yourself a bowl of cereal”.  There is a lot that *has* to be different in our day; a lot of my life is very hands-on care-giving.

But I can do something typical like have him play with his toys before bed, so I can get my laundry finished.  And I don’t have to feel guilty about that.