Don’t Make Me Put My Heels On and Roar…

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How quickly I go into a defensive mode.  Am I jaded?  Do I think everyone’s out to get me?  I have no idea.  We are on vacation right now and a few days ago we took the children to Disney World.  In the past we have always gotten the “special needs” pass for Mr. M.  Sometimes we used it, sometimes we didn’t.  This year, M was having a difficult time transitioning to the crowds and noise and movement all around him, so we went to get the “pass”.  They have a new-ish pass now that is linked to your park tickets or your park magic band and has a photo attached to it, so that it can’t be sold or used by someone not in your party.  The cast member at the counter wanted to know what we needed the pass for, a perfectly reasonable question and why I thought we would need a pass for him throughout the day.  I told her and she accepted my explanation immediately, but for some reason, I felt the need to defend my response.  “Look at him, ” I said, “he can’t even stand here with me right now.  There is no way he is going to make it through a lengthy queue with a crowd of people in the hot sun”. At this point, M was jumping up and down hurling himself towards the service counter trying to pull his body up and then crashing down on the floor where he would lay down and spread out as if he were making snow angels on the linoleum.  He was turning his head from side to side repeating noises, “bleh bleh bleh”, is a favorite phrase at the moment (from Hotel Transylvania 2).  By the time we left, I felt like she didn’t believe me, even with the obvious display of noise sensitivity and over-stimulation.  I would like to point out that now, looking back, I am sure ALL of this was in my head.  She was perfectly polite and helpful.  However, at this point, with a 9-year-old on the spectrum, why in the world would I even care if a cast member at a theme park thought I was trying to “pull one over” on the system?  I have tougher skin than that.  Or at least I think I do.  Maybe I don’t?  Maybe I am tired.  Am I constantly on the defensive so much in educational and extra-curricular settings that its an auto-response to anyone who questions my son’s diagnosis and our family’s hard work to handle the situation?  Two years ago when we took the children to WDW, I actually brought a copy of M’s diagnosis from the doctor so that I wouldn’t even have to go into the details of his neuro-difficulties.  Occasionally we have (a few – definitely not all) school administrators who declare they don’t believe M has a spectrum disorder at all.  That throws me into defense mode awfully fast.  They think he is stubborn or simply not trying with his schoolwork, often failing to keep in mind the amount of energy he has to expend in order to hold himself together to interact with other students and adults in an appropriate manner while managing the amplified sounds of the lights buzzing, and ambient classroom noises and movements.  His day is exhausting.  Every day.  I suppose that I feel a need to protect him from the blindness that some others have when interacting with him.  Eventually, I imagine I will have to let down my guard a little to gradually allow him to learn to handle those situations on his own.  That makes me exhausted just thinking about it!  Alas, that is another problem for another day.

#BeFierce  #Don’tGoDefensive

#IamAFierceMom

 

Kelly

 

I put the “I” in Impulse

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Being a parent puts you in a club so-to-speak with other parents.  For some it was a dream come true, for others a “gift” and depending on one’s circumstances it could be quite scary heading into the unknown waters of parenthood.  When you’ve found out you’re the parent of a special needs child you’re then put into a sub-group of parents that you never asked to join!  For some, after getting over the shock, it can be a relief to find other kindred families who may be going through similar growing pains.  To others it can be saddening or shocking.  As for me, I tend to bounce back and forth between relief of knowing why certain behaviors are happening with my child, and frustration at not being able to handle everything better.  Nevertheless, here we all are in this club.  Now, when you find yourself here, its really a sink or swim situation.  Most people become reluctant experts on their child’s particular type of disorder if they want to function.  Its almost impossible not to be.  A few years ago I just knew that something was wrong with my son.  I knew it.  I would ask family, friends, doctors and everyone said, “he’s fine, really, all kids do that”.  Yeah… I was still skeptical.  I didn’t believe it.  You know how it all those parenting books for new babies where they tell you to trust your parental instincts, well, I could just see the alarm bells going off in my mind.  There was something wrong, I didn’t care what anyone said.  I was determined to figure out what it was.  I scoured the internet for similar behaviors and asked all children’s experts that I came in contact with.  I finally got someone to take me seriously.  It was M’s first preschool teacher.  I asked her if he was doing ok in school one day before picking him up and she said “yes, he’s doing fine”.  I then saw M (through a glass window) begin squealing and running around as the children changed stations in the classroom.  (Transitions.  M still has trouble with transitions to this day.)  I pointed out that I didn’t think that behavior was normal and  without missing a beat, she offered to have him evaluated.  DH and I thought this would take a couple of days, or maybe it would happen the next week.  The very next day he was evaluated and we had a conference with the on-site social worker.  She shared her thoughts about his behavioral issues and gave us pamphlets on various occupational therapies and social therapies in our area.  Hooray!  We had a piece of information!  It wasn’t a diagnosis, but it was a place to start.  We received information about a special needs pre-kindergarten and M tested into the program.  Finally, we were going to get some help!  The program was amazing.  M was doing things that I didn’t think we were ever going to get him to do.  (Like sitting in a chair for circle time in class and learning to hold a pencil correctly.)  Towards the end of the year I asked the social worker there if she thought maybe he had ADHD or something similar.  That afternoon M came home with a stack of papers on Aspberger’s Syndrome.  (The school is not allowed to give a diagnosis of course, but this was her way of pointing us in the right direction.)  M had everything on the list.  Every single symptom.  Things began moving more rapidly after this and I found a great autism support group for parents and play group for children.  I found a behavioral pediatrician to receive a medical diagnosis.  We began private therapies and M received an IEP for kindergarten the next year.  Whew.  It was a lot – a long road and it had just begun.  I mention all this because even though I “know” so much about what is going on with him, it doesn’t always click with me right away.  For instance…. impulse control.

M has always had difficulty with self-restraint if its something he really wants.  When he was 3 it was strawberry syrup so we had to stop buying it because he would sneak into the fridge to get it.  When he was 4 it was wandering off – extremely dangerous, so we installed an alarm system and put locked gates around our house.  Now, its video games and granola bars.  While not as dangerous, its still frustrating.  The games I am working on – we have our schedule sheets that the children follow and it helps.  The granola bars…I dunno.  I may have to lock them up.  I’m not sure.  I just find it fascinating that often I can’t spot an impulse problem with M.  How can I not see it??  Is it because he is older and its just not the first thing I expect him to do?  So, my first impulse is to yell.  Its as effective as talking to brick.  I don’t recommend it.  My next step is going to be putting a meal plan on the fridge so that M knows when meals/snacks are going to happen.  I hate to feel like I’m structuring all the children’s lives around M’s issues, but it helps him, which keeps things calmer for everyone else and maybe it will help them as well.  Schedules, lists and calendars have always helped M to feel more grounded.  He can see what is coming next and its not a surprise.  This may work or it may not.  My particular brand of parenting seems to be a lot like running with your shoelaces untied.  I get a few good running strides in until I  trip and fall on my face and and then I get up and do it all over again.  Its a good thing I’m naturally tenacious.  Its a good thing M is so naturally forgiving.  Its worth repeating…impulse control is hard.   Transitions are hard.  Both may always be a problem.  Hang in there folks.

Be Fierce.  #MakeASchedule

#IamAFierceMom

Kelly

What kind of mom are you?

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I’m a worrier.  A worrywart my grandmother called it.  I worry about what others think even though I may claim not to.  Goodness knows I try not to worry about who may be judging me, but sometimes it just sneaks up on me.  A friend of mine posted a link to Facebook the other day from a blog post about different stereotypes of moms at schools.  Firstly I was just a little bit horrified because I am sure that I have been several of the moms in the blog post on at least one occasion.  Was it a joke post?  Maybe it was… I hope so!

There was the “hungry mom, pajamas mom, hippie mom, sports mom, PTO mom, perfect mom, and of course, the mom blogger”.  Did this even leave anyone out?  I mean, we can’t all be June Cleaver and if we were… wouldn’t that fall into PTO mom category?  Is that what other parents are thinking on the playground at morning drop off?  (Are you thinking that at drop off?)  I will admit we all have different styles.  There is one mom, that I see nearly every day and I don’t even know her name, but I call her “jogger mom”, because she does her daily run to the elementary school in the afternoons to pick up her child.  There is “svelte black-suit mom” that I’m guessing works in a corporate setting somewhere downtown because she looks very sleek and urban every day.  There are the SAHMs like me, who while having different styles, definitely dress more casually than the workplace moms at the school.  If we’re going to put labels on everyone, good grief, what about the exceptions!  Yes, I have dropped my children off at school still in my pajama pants.  I was also wearing a full-length heavy parka and snow boots at the time.  Its happened maybe twice in 3 years.  Do I get a pass for that one?  With a special needs child as well, some mornings … are just hard.  Most mornings are just fine and really we have a pretty good little routine down and let me tell you a happy ASD child is one with a good routine.  Sometimes though – sometimes are hard!  I think all special needs families and those with multiple children would agree that you can encounter crazy events trying to get out the door on occasion.  We woke one morning to find that my son had spread a very thin, even layer of sunscreen all over our living room rug.  Another morning he was covered in strawberry syrup (and so was the couch).  If you have one very ill child and two very healthy children and you’re trying to get out the door its a whole new host of problems and then what about the “spider”.  I’ve written about this before – when one of the children just.  Won’t.  Go.  They throw their arms and legs out like a spider so that they can’t get on the bus or in the car.  Its stressful.  I’m just saying that if you’re having one of those mornings, maybe fashion and hair styles aren’t super high on your priority list.  Maybe that pajama mom isn’t a “pajama mom” every day.  I think we ought to be a little more accepting of others’ situations before tearing them down.  Goodness knows the world is hard enough as it is.  Let’s not add to it.  Having an ASD child, I’ve been there when my child was having a very public meltdown.  Staring doesn’t help.  Silently judging doesn’t help.  Offering to hold my bag, water bottle, sippy, other child’s hand, etc, would be helpful.

I will admit that I have often wondered at the decisions of other moms that I see in passing because it doesn’t seem to be a decision that I would make, but that is also coming from my background and point of view and not theirs.  I couldn’t possibly know what its like to be in their shoes.  This is an important thing for me to keep at the front of my mind.

I’m just going to keep doing what I do.  Now what I may do, may not be what you do, or they do or he or she does, but that doesn’t mean that I don’t wholly accept the decisions that others make.  This is a really hard issue for me.  Its my “damage” really, so by me writing about it and putting my vulnerabilities out there – I’m really taking a step, but I have definitely done my share of value-searching today and I wanted to write about it.  So, my point, after all that, was if you see in me in my fleecy frog pajama pants and crocs running full-tilt across the playground with two or three children in tow, please, just pretend I was wearing lovely matching outfit in crisp fall colors.  Cross your fingers for me to not trip over a bump in the sidewalk in those crazy shoes because I was probably having one of those days already.

Be Fierce.  #WearFrogsLikeYouMeanIt.

#IamAFierceMom

Kelly

“You know you’ve sworn off BAKERIES for lesser offenses..”

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This was what my husband said to me after tiring of hearing about all of our church drama.  I just stopped mid-sentence.  Um, yeah, but its a church, not a doughnut.  I do really really love gourmet doughnuts.  You may recall my post here where I just “lost it” while waiting in line at Bennison’s, a local bakery here.  Quick recap:  I have 3 children plus DH and myself, I spend a minimum of $18 walking into a bakery and usually its more if we get loaves of bread or rolls, etc.  Its hard for me to get there to begin with, what with all the wiggly ASDness and whatnot, and its usually a “treat” for my children.  I don’t expect special treatment, but I do expect to get my “turn” in line after I’ve been waiting there for ages.  In any case, I know what he meant.  “Leave the drama alone”.  Per our difficulty with our special needs child at church and other religious education goals not lining up, we have officially left our church and the notification e-mails have been sent and phone calls made.  Here was my original post about that.  I am more upset than I thought I would be, but I do think it was the right decision in the long term.  I am most sorry that I have lost a couple of new, but good friends from the congregation due to just…. drama I guess.  I’m not even sure what happened.  Here are the reasons we left the church:

  1. Our spiritual journey is not aligned with that of the church and we can’t in good conscience continue along this path of religious education for our children.
  2. Our children are getting older and moving into the “big kid” classes.  It is important to us to have a more structured environment for their religious education.  At this time the staff, model and  structure for caring for our ASD child does not meet our needs.
  3. We have felt that the church is becoming more and more committed to social outreach causes instead of nourishing the body and spirituality within the church.
  4. Along with ministering to those with regards to racial diversification, economic inequality and immigration reform, ministering to individuals with special needs and the families who care for them can indeed be its own method of “outreach” into the community and we would like to be in a place where this is more of a priority.

I was also especially hurt because our “spiritual journey” is pushing us in more of a conservative direction right now and its just not something that I ever thought I would be judged for.  We don’t all take the same path.

Anyway, I’m off to Hewn.  They have amazing croissants.  😉

Be Fierce.  #Dropthatdoughnut

#IamAFierceMom

Kelly

You’re Never Too Old To Miss Your Mom

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I miss my mom.  Or at least I think I miss my mom.  She passed away a few years ago – 7 actually.  Wow.  I’ve been feeling like I’m missing something lately and I think that is what it is.  I also tend to feel blue around my mother’s birthday which is coming up this week.  I’ve heard this is common among people who have lost a parent, that you can almost sense when their birthday is by how you feel.  Its a particular feeling of being sad that you can’t quite put your finger on.  There isn’t really a remedy, and after a day or so you look at a calendar and realize your parent’s birthday is coming up.  Its an odd feeling.  My mother really didn’t make a big deal of her birthday before she passed, but boy I know when it is now.  The past few years, we have had a sort of “rememberance dinner” where we share memories and tell the children what she was like and we may show pictures, etc. I am planning to do that again this year.  Usually on our “big” summer trip I visit her gravesite, but I was unable to do that this year.  There was a terrible rain storm while we were on the way north and we just couldn’t spare the time with traffic and weather combined.  One thing that I really do miss is talking with my mom.  We used to chat almost daily.  It has become, thankfully, rose colored in my memory, but I do remember how frustrated she could make me over the phone.  Our personalities were so different and we (very) often clashed horribly.  We had terrible communication made worse by physical distance and cloud of emotional memories and expectation of one another.  Still that emptiness that she left remains.  I don’t suppose it really ever goes away.  I don’t always feel this melancholy about it, but a few times a year, it does hit me.  As I’ve gotten older, I have realized that without any siblings to help me remember places, holidays or events from when I was young, the memories that I have will die with me, unless I pass them on to my children.  Unfortunately I’ve also found it very difficult to recall some things.  DH has suggested I start writing down what I can remember, which I probably should.  I don’t really have a “best friend” that I can talk to right now, DH is pretty much it.  I have many many good acquaintances and a small, very cherished handful of friends.  Most of my friends are busy with their children during the summer or you know, they work outside the home.  Its just felt a bit lonely here lately as I haven’t even been seeing many of my acquaintances regularly without the rigorous schedule of the school year in place.   This too shall pass as they say.

Be fierce.  Cherish your memories!

#IamAFierceMom

Kelly

Careful casting that first stone…

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I was reading up on other mom-blogs, like I do occasionally to see what everyone else is doing, look for trends, be inspired and so forth and I came across a troubling guest post from someone who has written a book basically saying how much she wished she had Bounce™ sheets for her towels when she was growing up.  Ok, I exaggerate.  But still.  It was that ridiculous.  I am not going to “call her out” or link to the article and start some kind of a “posting war”, but truly, it warrants a response. To be fair, I am sensitive to others criticizing their parents’ skills while raising them.  I am constantly worrying that I am not good enough, strong enough, loving enough, smart enough, energetic enough (you get the picture) for my children.  I think *most* parents do the best they can with what they have.  Often adults and their children have personality clashes and it makes things difficult.  This is life people.  Hopefully, hopefully, by the time you’re 25 or so, you’ve figured this out.  Also, everyone’s “love language” is a little different.  G shows his love through technology.  Are you laughing?  I nearly do every time I think of it, but its true.  For my birthday last year I got a car stereo.  For Mother’s Day this year I got a new computer.  When I went to visit my dad who has been in the hospital, G uploaded all the latest and greatest travel apps on my phone complete with logins and passwords.  Its his way of caring.  Some show love through spending time together, through words, through acts of kindness or generosity, through gifts.  It really varies depending on the person.  So, back to my story… the author was promoting her new book and giving new tips about ways to show love to your children without “spoiling” them.  Her first tip involved giving her son (he was 4) a $10 balloon because he was brave during a doctor appointment, after she had first promised him an ice cream.  I love my kids.  More than life, I love my children.  They cannot have a $10 balloon for good behavior.  If you live within a socio-economic scale where that is the norm, than that is one thing.  I don’t.  A sticker definitely, an ice cream possibly if there were shots for vaccinations or other medical procedures involved.  Ten dollar gifts, no.  Her thought process was that even though the balloon cost so much more than a $2 ice cream, she wanted him to know he was worth it.  Do your children know the value of ten dollars at 4 years old?  Mine didn’t/don’t.  I want my children to remember that they are worth my time, my effort and my energy.  Money is fleeting.  It comes, it goes.  Sometimes we have more than others and I’m happy to spend more of it when its available.  (Right?  LOL!) Sometimes we don’t have a lot of expendable income and so I want my children to know that even then, they are loved.  They are valued, we’re still together and that is what matters.  I digress.  So the author went on to describe how her family did not have a lot of money and so she felt very deprived and like she was not valued by her family.  One of her examples was that her mother dried their towels and clothes on a line to save money on their electric bill.  (My mother did that because she loved the smell of fresh air in her clothes and linens.  Anyway.)  She vowed that when she had a family she would have Bounce™ sheets and use the dryer.  Now everyone has little things from their childhood that they “vow” they’re never going to do with their children and I get that.  Personally, mine involved not forcing my child to eat coleslaw.  Ewwww.  However, she was on a rant about how devalued she felt because of her family’s income and her upbringing, but it all seemed to be based around money.  Her parents provided for her, but they were not wealthy.  Some families just aren’t.  She seems to have turned out ok.  She’s here.  She’s an author of some sort.  She’s a mother.  What I’m trying to get at is, “Could she have done a better job with what her parents had in their situation?”.  Because again, *most* parents really do the best they can with what they have.  Parents are human too.  We make mistakes.  Maybe forgiveness comes with time.

Be fierce.  Forgive and move on.

#IamAFierceMom

Kelly

Calm Before the Storm

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Can I just say that I love love spring?  I just love all the little flowers that pop up everywhere.  I love the beautiful smells in the air.  I have an enormous lilac tree (it would be a bush, but its just huge) in my backyard and it just smells heavenly.  Especially when its humid or after a rain.  I just feel my blood pressure drop when I go outside and fill my lungs with that sweet air.  I do that sometimes.  I just walk outside and breathe.  Its not like I don’t have air in my house, but often I feel like I can’t breathe enough of it IN without going outside.  Maybe its a side effect of being cooped up for much of the winter?  I know that I should be in spring cleaning mode dashing around opening up the house, scooting the dust bunnies out… but I dunno….  a nap would be nice too.  G and I have been so drowsy on the weekends (as much as we can be going to and from soccer practices and this weekend, an arts festival), its hard to purposefully add things on to our to-do list.  Think about it.  Its warm out, the windows are open, the flowers are blooming and there is a soft breeze… it just screams NAP!!  Not DUST!!  Right??  I mean, by nap, I mean probably a few minutes of quiet if I can get it squeezed in, but still, its nice.  Today for example the children were finally playing on their own, G and I were relaxing or rather, decompressing from the past week and suddenly, Miss S runs up to me with her hands clamped over her mouth and muffles something about water.  There is a puff of air freshener when she talks.  Confused I followed her into the kitchen and demanded that she spit out whatever was in her mouth.  It wasn’t much as it turns out, but there was the air freshener smell again.  Oh no.  “Miss S!!  Did you EAT the air freshener (one of those oil fresheners that plugs into the wall)?”  Silence.  “Did you??”  Now I was panicking.  I couldn’t get her to explain without spitting on the floor, so I found the air freshener pulled apart, wick out of the holder and oil spilled.  I called poison control.  I have them programmed into my phone of course.  (This isn’t my first rodeo folks).  Anyway, after 30 seconds of explaining my situation, the poison control operator determined that although she may end up with an upset stomach, she didn’t need to go to the ER, and also told me what to keep an eye out for, just in case.  ::::collapse::::  I burst out in tears.  It was the tension.  We’d already been to the ER with Mr A this week, I didn’t think I could do another trip right now.  “Why is it so hard to keep them alive?”  I wailed.  After I calmed down, Miss S and I had a serious talk about how we only put food in our mouths and how other things MAY be harmful and that she should ask FIRST.  Turns out, she thought it would sound like a whistle and she wasn’t actually trying to eat it, but play with it.  Oy.  I swear I got 5 new gray hairs today.  So yes, a few minutes of relaxation and a few minutes of mayhem.  This is why I do not seek adventure or excitement.  It finds me.  Always.

#IamAFierceMom

Kelly