An open letter to Principal Thiessen of Wichita East High School

My official post follows, but my first reaction is this:  Are you serious??  You actually had MEETINGS about how to take things away from children??  Really??  And you work at a SCHOOL??  And from my DH, “Did they refund the money to the parents for the coat and accessories that they bought?”.  I have no idea.  Seriously people.

Here is a link to one of the many many articles about this situation:

http://kfor.com/2015/03/27/mother-special-needs-teen-told-he-couldnt-wear-varsity-letters-on-jacket/WichitaEast Photo from KSN TV.

Dear Principal Thiessen,

Do you really feel that you are setting a good example for the children in your school and community by not being supportive of the special needs athletes at your school?  Do you know how hard it is for children with special needs to even function in an integrative setting let alone do it well while excelling in  extra-curricular activities?  Would YOU be able to do that?  I have to tell you, from the outside, this looks like a (sad) power struggle between the adults and children in your school district. If this a situation where you feel like you’re setting the neurotypical children on a higher plateau, apart from the special needs children because you feel that they are somehow superior, you are deeply confused.  If that makes you feel good about yourself, truly you have my deepest sympathy.  Mark my words sir, it is many of the autistic children of the world that one day many of us are going to call boss in about 15 years.  True, not all special needs children are not savants, and this child in particular also has Down Syndrome, but that is even more of a reason not to squash the children who have to try harder in their day to day activities.  We have such bigger problems in the world than trying to snatch things away from special needs children that may help them to feel like a bigger part of their community.  Let’s lift our children up in their community, support them and show them that we care.  Let’s see what they can do with us.
*Also, its a coat.  Why can’t the child wear the coat his parents bought for him?  Its for athletes.  He’s an athlete.
#LetMichaelLetter  #GiveThemLetters
Be Fierce out there, do what is right,
#IamAFierceMom
Kelly
*this was covered at http://www.si.com, USA Today, CBS, NBC, Reddit, and various other news outlets.  Speak out!  Make a sound!

I Had Trouble In Getting To Solla Sollew

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“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I’ve bought a big bat! I’m all ready you see. Now my troubles are going to have troubles with me!”-I Had Trouble in Getting to Solla Sollew, Dr. Seuss

If you haven’t read this book.  Read it.  Right now.  I’ll wait.  :::::waits:::::waits::::::  There!  See how awesomely amazing that was?!  SO inspiring.  DH and I read this to our children’s classes every year.  The kids love it, we love it, it has a great message… just so much love.  I thought about this book this past week.  We had those darn swimming lessons again and by golly there we all were, all 5 of us (DH was able to work from home for a few days) on Wednesday at the pool.  After some pushing, prodding and doughnut bribes we got M in his swimsuit and down to the pool.  I swore to M that there were no fewer than 6 adults ready to dive into the pool should he look like he was not keeping his head above water.   (and then of course I had to point out which ones they were around the pool you know… precision and all.)  All 3 mons-ners were in their classes and DH and I were the only parents sitting on the bench AT the poolside leaning way over towards the water.  Giving M (and A and Miss. S too) the biggest thumbs up and cheers that we could manage and still be indoors.  I tell you what that little boy got in that water, absolutely terrified, but he did it by George.  There was some crying and some negotiation.  He refused to swim to the deep end and opted to get out and walk around to the deep end instead.  But, once there, he did jump in the water…. at the deep end, with the rest of his class, and he swam back, through the deep end to the shallow water.  Good heavens we were so proud.  SO proud that he faced his fear like that and gave it a good try.  SO proud that he didn’t just give up.  SO very proud of him for being brave.  That is such a hard lesson, to learn to face your fears and try something new while you’re scared.  Its a difficult concept even, that its OK to be scared, but also the idea that it shouldn’t necessarily stop you from doing something.  Whew.  Anyway, there was MUCH celebrating after swimming lessons that day and M indeed earned his iPad back.  On Friday, after having made several “scenes” by the pool over the course of the previous couple of weeks, DH casually asks, “You told the swim instructor that M is autistic, right?”.  Um…. oh no!  I’m not sure… “Uh, I dunno, maybe?”.  ::::face palm::::  Really??  Have I forgotten to mention this for the past 6 weeks??  O.o  So much fail.  So, dashing over to the pool right before the lesson that day I ask the instructor if we had mentioned that M was autistic and he says, “No”.  Of course.  I apologize and quickly give a few pointers for communication with M before heading up to the stands to watch the class.  In my head I am kicking myself profusely.  You see sometimes we do disclose, but sometimes we don’t.  Its hard to tell when its necessary at the beginning of an activity and it can bring up irrelevant and obsurd conversations that I try to avoid.    Obviously, there was some difficulty around week 3 with the swimming lessons so I should have disclosed and probably just thought that I had mentioned it.  M is autistic, but its not all he is.  Depending on the setting and activity, you often can’t tell that M is any different, so why bring it up?  I don’t meet people and say, “Hi, I’m Kelly, I have a moderate hearing loss”.  Right? Wouldn’t that be weird if I did that?  He is a bit different in a social group, but eh, he has really learned to use most of his quirkiness to his advantage and well, the rest of the time, it may look odd, but it certainly doesn’t bother him at all.  I love this quote, “Your curiosity, is not my problem”, and I try to keep that in mind.  (I once had a lady try to give M a diagnosis in the check-out line at the grocery store.  Seriously.  Too much time on her hands.  Buy a sukoku book or something, anything!)  I digress.  I often hear in my autism moms’ group that its two steps forward and one step back, two steps forward and one back.  That seems to be how its going for now.  Still, progress is progress!  So!  One “trouble” down!  Next up!  My troubles are going to have some trouble with me. #IamAFierceMom Kelly

Shifting my focus

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When I had M, my first little mons-ner (above), he was such an adorable peanut.  The softest skin, the bluest blue eyes, long skinny spindly legs.  I called him my little tadpole with those legs.  In fact, he still has very blue eyes and long skinny legs, in many ways, he is very much the same.  I still remember the very first time he smiled at me and looked me in the eyes – its the same smile he has now.  He has my eyes, and I remember being so in awe that I saw my own eyes looking back at me!  How shocking that was!  My world suddenly changed and nothing was about me anymore.  Eventually, we had our roly-poly blue-eyed second little boy, A, and then our vibrant Miss. S.  Now, my world is constant motion revolving around my 3 little mons-ners. I simply didn’t care anymore about going out with friends, seeing big movies, having the newest must-have electronic toy.  I cared about baby classes and diaper bags and which diaper cream would be best.   I could not have been happier about that.  Now, however, because in my world, everything is still about them, I find it difficult to fit in all the things that keep me going:  doctor’s appointments, hair cuts, um, lunch.  I finally pulled out the calendar and the phone and got to making some appointments all at once for myself this past week to get them out of the way for the year.  Friday was my optometrist appointment to get a quick exam and new glasses.  I had to fit the appointment in between 2 school schedules and swimming lessons – no problem.  I arrived at 11 AM, had the eye exam, pressure test and went to pick out frames.  The doctor came back to find me to re-do the pressure test.  No problem.  One more pressure test and back to looking at frames.  They really didn’t have the darker pink color of frames that I was looking for so I settled on purple.  The sales person was beginning to get irritated with me because I kept leaving…. to have an additional pressure test.  After the 3rd or 4th pressure test the doctor pulled me back into the examination room for a consultation.  Now I was nervous.  My eye pressure was elevated and he suggested I see an ophthalmologist soon.  “Absolutely”, I said, “I will make an appointment on Monday”.  “No, I mean you need to see someone today”.  Oh.  Um, ok.  He gave me a card for a referral and wrote some notes for the new doctor that I would be seeing and sent me back over to look at the frames.  Again.  At this point, I did’t give a flip about the frames.  What good were frames if I wouldn’t be able to see out of them in the first place?  I picked up the purple frames that I had casually looked at once before, paid with the wrong bank account (sorry honey!  I was very scattered!), and left, an hour and a half after I had arrived.  I called the ophthalmologist’s office on the way home and got a harried receptionist who obviously needed a lunch break or something and didn’t want to be on the phone right then.  After hearing that i would be a new patient, she really didn’t want to talk to me because that would mean more paperwork (I’m guessing?) for her and booking my appointment.  She said they didn’t have any availability for a few weeks and asked if the referring doctor had given me any further information on my contact sheet.  I read her the list of numbers in reference to my eye pressure and said that I couldn’t make out the rest of the handwriting.  She put me on hold.  When she came back on the line, she asked if I could come in at 3:45 PM that same afternoon.  I hesitantly said, “sure”, and tried to mentally figure out how to work everyone else’s schedule around mine.  Now I was really nervous.  My stomach was in knots.  Thankfully DH was home for the weekend and we swapped mons-ner duties.  Later that afternoon I was in the ophthalmologist’s office having test after test after test on my eyeballs.  I was actually tired from seeing so many flickering lights.  I should probably point out that up to this point, I had only been wearing “driving glasses” for a couple of years and have never had much of any trouble with my eyes whatsoever.  After all the testing, the doctor sat me down and said, “You have a really good optometrist.  It is very unusual to catch something like this so early.  You have glaucoma with pigment dispersion syndrome”.  What??  I have what?  And suddenly, just like that, while I was sitting in that blue chair, my world turned inside out and now my focus was completely on me for a moment instead of the mons-ners.  It had been a really long time since I mentally focused so much on myself.  The doctor gave me a bunch of literature and a prescription for some trial medication to start and tried to reassure me that I would be fine, not to panic, that I had caught this very early.  The trick was, I would have to be extremely vigilant with my treatments and medications because any further damage would just add to the permanent damage that was already done.  :::deep breath here::::  Ok.  ok.

I called DH and explained my diagnosis and well, went on with my evening appointments for the day.  When I did get home eventually around 10PM.  I was just emotionally exhausted.  It was a different kind of worry to be worried about myself instead of my mons-ners.  I need to be healthy and actively able to care for the mons-ners in order to do my job.  I was going to have to figure out how to organize myself to keep me going strong, and learn not to take that for granted.  Its new, so I’m working on it.  I have a medication schedule now as a visual reminder of what I took when, so that I don’t miss anything or accidentally cause fluctuation in my eye pressure.  As a parent, I think its natural to have a shift in focus so that children become the forefront of our lives.  As they grow older, I am learning, it is also important to shift a little of that focus back to ourselves so that we can stay strong for them.  It is a long road, after all.

Be Fierce.

#IamAFierceMom

Kelly

Pow!

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Oh I am so frustrated!!  SO frustrated!!  I simply cannot get M’s complexities all lined up so that I can effectively communicate with him.  Its like a never-ending rubix cube!  M will not go to swimming class this week!  He just won’t go in the water!  He does what I call the “spider”, re:  stretched out arms and legs attached to anything permanent.  698160_32724648On Wednesday at the mid-week class, I couldn’t even get him out of the car!  I had to give-in to agree to let him sit that class out so that I could get my other two to their swimming class.  He also got in trouble for pulling that power-struggle with me and is now on restriction from video games.  Oy vey!  I’ve tried pleading, begging, reasoning, reassuring him that we will work with his instructor to try to make it as painless and comfortable a transition into the pool as possible.  No dice.  Here is how serious he is… he actually came up to me the other day and said, “Its ok if you want to keep my iPad mommy, you can have it”.  *headdesk*  Just.  Broke.  My.  Heart.  I don’t want your iPad child!  I want you to NOT drown in the water!!  My head could not be hanging any lower right now.  The current bribe I’m offering is return of the iPad and a trip to the bakery (!!)  if M will attend swimming lessons voluntarily.  We have a super-good bakery in our little town folks, Bennison’s, I mean that alone would have me dog paddling away in that pool.  (Not so great for my Paleo ambitions though I suppose, right?)  M has a lot of Aspberger tendencies, but apparently does not actually have Aspberger’s.  (I really could swear he has Aspberger’s though.  He has every single one of the things you look for in an Aspberger’s diagnosis – even though they don’t technically diagnose that anymore.)  Because of this he has a niche interest in high-level video games.  I really really thought that would be enough to persuade him to just try the swimming again.  We talked about the noise level and I have ear plugs to help with that.  He has a very small class so there is a lot of one-on-one attention and his instructors are SO understanding and patient.  At some point though he has to make the choice to try.  He has to be the one to get IN the pool.  Somehow he is just not making the connection between working and a reward.  As in, you have to go to work at a job (hopefully one that you enjoy!), and sometimes have to do parts of the job that aren’t your favorite things, or that may be difficult and where you may have to try and try again, but in the end there are rewards to be had!  Feelings of accomplishment, confidence, growing your skills, monetary rewards in the case of a job, etc.  Is he going to learn this?  Am I expecting too much from him?  I have developed this little habit of trying to keep myself from falling into a depression spiral.  I use various self-talk phrases to remind myself of what is happening in reality (ie.  not in my head) and what is important.  So right now, its:

  • He’s 8.  I’m his cheerleader.  This is just a small bump in his road.
  • He’ll get through this.  I refuse to believe any differently.
  • If he can learn to read, he can learn to swim.  *This one is a big one for me.  Keeps me sane.
  • #prayhard.  I am his mother for a reason.  I won’t give up on him just because its hard.

Stubbornness.  Its hereditary.

So I have so much built-up anger!  I’m not even sure what I’m angry at!  The water?  My inability to persuade M?  I should have gone to kick-boxing class today.  That always kicks my butt and I leave with a clear head.  Maybe I can hit the gym this afternoon.  That would help me to reset.

#IamAFierceMom  *I won’t give up, just because its hard.  (and today, its really hard)

Kelly

Would you go Paleo?

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I’ve been looking at doing the “Whole 30” eating plan.  The basic premise is that you eat exculsively Paleo for 30 days with no exceptions and then you can moderately ease into a less restrictive Paleo diet.  I’ve been thinking about it 1) becasuse I have got to do something to increase my energy level and 2) I have a couple of friends who have gone “Paleo” and they love it, although they say it takes some discipline to start.  On the Whole 30 site it says, “Beating cancer is hard. Birthing a baby is hard. Losing a parent is hard. Drinking your coffee black. Is. Not. Hard.”  That’s true.  I feel like that can includes so much more in my life when I take a step back from my life “busy-ness” and look around me.  Little things can feel hard, when they disrupt our comfort.  Let’s take today for example…  I am AWFUL about getting all the tedious paperwork done for our vehicles on time.  I do it… just not on time.  I feel like that “maintenance” red light on the dashboard of my car is like a built-in back up just for me.  Its going to stay there staring at me, until I take the car in for an oil change.  Its like the car sticking its tongue out at me blowing raspberries.  So, I did that yesterday and no more red light.  Yay!  Today I took the car in for emissions testing and then to the Currency Exchange to get a current tax sticker for the car.  I cannot tell you how I dislike those shops.  They feel dirty inside.  You would think the atmosphere alone would be enough to make me send in my payment ahead of time so that I wouldn’t have to go there.  I believe that because I’m not confronted with it, I just put it out of my mind for as long as possible.  Eventually I have days like this, where I have a panic attack, lose my phone and phone cover, step on a bumblebee and then get a ticket for not having a wheel tax (??  seriously, its a thing) all in one day and I wish wish wish I had done all of my car paperwork early.  This year I’m making my wheel tax payment online.  *cheers for not having to go into a creepy building*  Anyway, my point.  All of those little things seemed so hard, but they weren’t actually hard.  I had just built them up in my head. Eating “clean” as in a Paleo plan has been built up so much, because it pretty different than what I am used to and I have convinced myself that its hard.  I’m so intrigued by it and I can’t even tell you why.  Is it because its called, “the Cave Man Diet”?  Is it because I have friends who are doing it?  Am I really that influenced by my peers?  (still?)  I have no idea.  In the meantime, I have gotten a book about it called the Paleo Manifesto by John Durant, and I’m trying to learn more about it sort of hoping it will cure my curiosity.  I don’t think I could drink my coffee black though.  I think I would have to switch to unsweetened hot tea.  As Momastery says, “we can do hard things”!!  (Even things that aren’t actually hard, but seem hard at the time.  You know what I mean.)

#BeFierce  *Tell that car paperwork or hot tea who’s boss!

#IamAFierceMom

Kelly

Letting go, but not giving up

A Happy Moment in the Pool

I want what probably every mom wants for her children… I want them to grow up happy and healthy and to be involved in activities and to make friends and have play dates.  Often, usually when things are “going well” around here I get a little too ambitious and I have this odeous habit of comparing my family to other families.  That is so wrong on so many levels its a post of its own.  But still, I do.  So, we made it through the crazy busy-ness of the holidays and into serious winter with gobs of snow and ice everywhere and the unending subfreezing temperatures and I had just about had e-nough of my children bobbing up and down indoors with excess energy.  I swore to DH, “we are getting them into an activity no matter what!”.  Swimming is actually a big wintertime activity here in the Midwest becuase almost all the pools are indoors.  Swim Teams are all over the place up here.  This, I thought, would be perfect.  Besides, all of their cousins swim like fish, its beyond time the mons-ners had some lessons and soccer doesn’t start up for another 6 weeks.  (See that comparison there?  Keep your eye on that one.)  Ok, got everyone signed up and we were ready to rock the pool!  ::::deep breath here::::  Not sure if you’ve ever had to bring 3 children (1 special needs, 1 toddler)  in from the snow to a pool, get them in swimsuits, showered and down to different classes, but its a j-o-b.  I was determined!!  I am a Fierce Mom!  I’m doing it!!  Ok, sweaty (me) and half naked children running around the (wrong) locker room, but eventually we made it to the classes.  45-minutes later and they were done except for one little thing.  M just hated his class.  Sobbing with tears running down his face when I picked him up by the pool, I was pretty sure there was no way I was going to get him in the pool again even with my magical special needs parenting skills.  Fastforward to class number 2 pretty much the same….. and the sobs.  At class number 3 we found the correct locker room!  Woot!  Still with the sobs.  Today was class number 4.  More sobs.  I was sitting in the gallery watching my littles swim around and two of them are giggling and splashing like little maniacs and M, long, slim and lanky, wailed as his swim teacher pulled him towards the deep end of the pool.  I went into “mom-mode” you know, where you can hear your children’s individual voice even in a sea of others?  I heard the crying, the pleaing, the call for me.  My eyes watered and my fingernails dug into the thighs of my jeans.  I willed myself not to look too closely at him, not to catch his eye because it would just make the situation worse.  I tried to take deep breaths and keep my composure.  There were other families from our community and school all around us and I didn’t want to be the “freaked out mom” in the swim gallery.  I know when to push M and when to let him slide.  DH and I discussed the lessons at length before signing the kids up and we knew that it would be hard for M, just the setting of it, the noise and echoes in the pool are stressful for him.  We both agreed that swimming was not optional, its a safety issue as our home is walking distance to Lake Michigan.  As soon the children learn how to swim, reasonably well on their own, they don’t have to take lessons anymore unless they would like to join the swim team.  Until then, its lessons every session.  We made it through the sobbing session in the deep end of the pool and bless the swim instructor he had M giggling before it was over with and eventually back in a more reasonably shallow depth.  I was sad.  I was really really sad that even swimming lessons would be so hard for M to get through and as I was beginning to wallow in my self-pity with my sweet mons-ners not being the little fish that their cousins were DH simply looked up from his laptop (working from the pool!) and said, “You realize he didn’t get out of the pool.  He didn’t even ask to get out of the pool.  He stayed.  He is trying.  With all the noise and the over-stimulation and the constant movement of people and water, he stuck it out”.  Instantly I could not have been more proud.  He did, didn’t he?!  That boy.  That sweet, quirky, overly energetic boy is learning to self-regulate.  Its painful to watch.  Like fingernail marks painful to watch, but he’s getting it.  Just this past week he was up in the middle of the night doing his homework because it was unfinished after a long day of school and social communication therapy and you know, most ASD children don’t like to leave something unfinished, its like a lighted beacon until the action is complete.  He can remove himself from loud situations at school on his own.  He can move himself to a corner to complete his work, on his own, so that he is not so easily distracted.  He is getting there and I think he will get these swimming lessons done as well.  Its me that needs to change, not him.  He’s battling uphill though loud echoes and water.  I need to reevaluate my expectations and timetable.  He will probably take this particular class again while his brother moves on and you know what, that is ok.  As long as he makes progress and eventually gets those important skills, that is all that matters.  We’re not in a race and there is not a finish line.

#IAMaFierceMom

Kelly

My hobby, my life

 

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I feel like having a special needs child is almost like a hobby that you didn’t ask for.  You have to learn all about it.  It can engulf entire days.  It permeates your life – your whole life.  You have to get good at it – sort of a sink or swim mentality.  I remember when we first began to suspect that our son was different.  He was about 2 and a half.  We started calling around to different doctors and no one would even really talk to us about it saying that they thought he was too young to even look at about having a disorder.  (Now the theory is that ASD can be diagnosed at or around 18 months.)  We knew though.  We knew there was something not right.  We would ask other people and family and everyone would tell us not to worry that he was just “fine”.  I hate that word by the way.  “Fine”.  There is nothing more generic than “fine”.  Ugh.  Anyway.  And he got older and we had a second child who was so different and was checking off those milestones like it was a to-do list.  At some point during M’s third year, I remember having one of my lowest points as a parent.  I’m not proud of it, but I try to keep it at the front of my mind to remind myself that I did get past that point and moved on.  WAY on.  Time changes people, situations, and time heals.  I remember being so very overwhelmed by M and thinking, “we just can’t have a child like this, this just can’t be his personality.  Is he really like this?  Is this permanent?”.  Well, that was 5 years ago and I can tell you, it is permanent.  He IS really like that.  That really IS his personality.  It really IS ok.  It doesn’t look “average” or “normal”.  We do attract stares and I’m sure we inspire a lot of conversations.  Hopefully the good kind of conversations about how to interact with children who may have special needs, but who knows.  I really did survive, and possibly have even come out a better person on the other side.  M has taught me literally how to expand my heart.  How to expand my love for my children.  Now I just take it literally a day at the time.  We have great days and well, days where we just go to bed and try it again the next morning.  I have learned so much.  SO much more than I ever wanted to know about autism.  I have learned to trust my gut as a parent to M and that I know what he can do (when to push him) and what he may need help with (when to take it slow).  My skin has gotten a lot thicker.  I was at Target last week and M was with me.  He was tired.  He’d had a long day and we just had to pick up a few things before going home.  I was shopping and at one point he just laid down on the floor.  He wasn’t in the way.  He wasn’t even making a noise.  He was just tired.  He’s 8 and tall so he doesn’t really fit in the shopping cart anymore, otherwise I would have put him in there.  (Until recently, I did that.)  Whenever I would start to move the cart he would get up and we’d go on to the next aisle or spot I needed to look and he would sit or lay back down on the floor.  This continued on and eventually I saw this woman just gaping at us from the end of the aisle.  Hey, that’s ok with me.  His behavior was the best that he could do at that moment and I don’t walk around expaining my familial medical history to everyone I encounter.  I glanced at her and M and I kept going with our shopping.  I almost immediately forgot about the encounter by the time I got to the car and then I thought, “hey!  About 2 more crazy looks like that from people in public and I’m not even going to notice anymore!!”  I was so proud of myself.  Heck I was proud of M.  Not sure if you’ve ever seen an autistic meltdown in public, but they’re not fun and that could have happened.  It didn’t.  He held himself together and I tell you that’s not nothing.  If Jane Q. Public has enough spare time in her day to spend staring at people in stores giving them the evil eye, that’s her business.  I don’t have enough spare time to worry about that.  Staring at my child is not going to cure his autism just in case you are wondering.  (I think that might be a bumper sticker).  Do I still worry about M and what the future will bring?  Of course.  Daily.  I’ve also seen how far he’s come though and we have a long way to go.  I read a lot.  I do a lot of trial and error.  I apologize a lot.  Its my hobby I didn’t ask for.  We’ll figure it out as we go along.

*Staring doesn’t help.  An understanding smile might.  Be nice.

#IamAFierceMom